HEARTLAND List

Pediatric Telegenetics model published from the Heartland!!--CONGRATULATIONS, Shobana, Brad and Sid.

Dean, Lori — Fri, 5 May 2017 14:16:37 +0000

Dear Heartland colleagues,

Dr.Schaefer, Dr.Sivamurthy and I would like to announce the publication of a manuscript on pediatric telegenetics service. This was funded by a Heartland Genetics and Newborn Screening Collaborative grant.

We are so appreciate of the support we received from the Heartland Collaborative to develop this genetic service model.

The manuscript is available as open access at https://urldefense.proofpoint.com/v2/url?u=http-3A__www.nature.com_doifinder_10.1038_gim.2017.45&d=DwIFAg&c=qRnFByZajCb3ogDwk-HidsbrxD-31vTsTBEIa6TCCEk&r=wUxZMV97wVYduT9iFBE8MqmmDIVFPAf0Esk9E24De1E&m=qg8d5_ZgQJS49awaH8hpEc_xeBimOR3KAwWUo9Ir8qw&s=92IZpE2cymmnVbvI0s-mOn2nvJVuF5Of-Fa8P6fynAA&e= <https://urldefense.proofpoint.com/v2/url?u=http-3A__www.nature.com_doifinder_10.1038_gim.2017.45&d=DwMGaQ&c=27AKQ-AFTMvLXtgZ7shZqsfSXu-Fwzpqk4BoASshREk&r=QsbmBPcyOfvLoEvokS1mRA&m=iFdBsldw37XJ984coqJnMVNjb57D6LOwxJqSAuYlLGQ&s=dELxMFDxbDQWz1Z3AvulHxyIxPIbo26rTTqdJrNPMPw&e=> [...]

FW: CLSI Call for Volunteers for Revision of NBS01, Blood Collection on Filter Paper for Newborn Screening Programs Open Through 23 May 2017

Dean, Lori — Thu, 4 May 2017 15:12:25 +0000

From: bounce-1079548-8125672@lists.aphl.org [mailto:bounce-1079548-8125672@lists.aphl.org] On Behalf Of Lori Moon
Sent: Thursday, May 04, 2017 10:08 AM
To: aphl-NewSTEPs
Cc: Ojodu, Jelili | APHL; Whitley, Ron; Dr. Victor De Jesus
Subject: [aphl-newsteps] CLSI Call for Volunteers for Revision of NBS01, Blood Collection on Filter Paper for Newborn Screening Programs Open Through 23 May 2017

Dear Newborn Screening Community, [...]

FW: Help us spread the word: PKU Congressional Briefing

Johnson, Holly A — Fri, 13 Sep 2013 14:01:33 +0000

HOLLY JOHNSON
Department of Imaging & Radiation Sciences*
UAMS Slot 563, 4301 W. Markham St.
Little Rock, AR 72205
(501) 686-5948 phone
(501) 526-7975 fax
hajohnson2@uams.edu<mailto:hajohnson2@uams.edu>
Divisions of Radiologic Imaging Sciences, Nuclear Medicine Imaging Sciences, Diagnostic Medical Sonography & Medical Dosimetry

From: Phenylketonuria (PKU) Support Group [mailto:PKU-SUPPORT-L@LISTSERV.CC.EMORY.EDU] On Behalf Of Nicole Polkowski
Sent: Friday, September 13, 2013 8:51 AM
To: PKU-SUPPORT-L@LISTSERV.CC.EMORY.EDU
Subject: FW: Help us spread the word: PKU Congressional Briefing [...]

Recall last message

Smith, Mark A — Tue, 4 Jun 2013 21:14:32 +0000

My apologies - the last message was accidentally sent to the listserv. Please delete.

Mark A. Smith, M.S.
Resource and Family Support Coordinator
Nebraska Center on Disabilities
Munroe Meyer Institute for Genetics and Rehabilitation
985450 Nebraska Medical Center
Omaha, NE 68198-5450
(402) 559-5744
Fax (402) 559-5737
msmitha@unmc.edu<mailto:msmitha@unmc.edu>

University of Nebraska Medical Center E-mail Confidentiality Disclaimer *****************************
The information in this e-mail may be privileged and confidential, intended only for the use of the addressee(s) above.
Any unauthorized use or disclosure of this information is prohibited. If you have received this e-mail by mistake,
please delete it and immediately contact the [...]

Re: Please Join ACMG for a Two-Part Webinar Series on the Current Crisis in Molecular Pathology Reimbursement

Smith, Mark A — Tue, 4 Jun 2013 21:12:01 +0000

I can talk about some highlights from the PowerPoint (attached.) I could go through the Initiative plan slides and talk a bit about Genes in Life and some of the other initiatives.

Mark A. Smith, M.S.
Resource and Family Support Coordinator
Nebraska Center on Disabilities
Munroe Meyer Institute for Genetics and Rehabilitation
985450 Nebraska Medical Center
Omaha, NE 68198-5450
(402) 559-5744
Fax (402) 559-5737
msmitha@unmc.edu<mailto:msmitha@unmc.edu> [...]

FW: Please Join ACMG for a Two-Part Webinar Series on the Current Crisis in Molecular Pathology Reimbursement

Dean, Lori — Tue, 4 Jun 2013 16:52:13 +0000

Lori Williamson Dean, MS, CGC, LGC
Department Chair and Assistant Professor, Department of Genetic Counseling
Program Manager, Heartland Genetics & NBS Collaborative
University of Arkansas for the Medical Sciences

Phone: 405-819-2135 or 501-526-7703

https://urldefense.proofpoint.com/v1/url?u=http://www.uams.edu/chrp/genetics&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=rX%2BpwtxS62RFz%2BMe%2BGygIuxlYqsdJqSFMkXPQTg4Occ%3D%0A&m=6N55CscmrooxS4YIPaFQykFN9yvBJ0YmC%2FG1E1dakU4%3D%0A&s=ba60c7c3d89799c9ad92d91b3296894aec29c5ba265d2c29bfc641088fa82d43
https://urldefense.proofpoint.com/v1/url?u=http://www.heartlandcollaborative.org/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=rX%2BpwtxS62RFz%2BMe%2BGygIuxlYqsdJqSFMkXPQTg4Occ%3D%0A&m=6N55CscmrooxS4YIPaFQykFN9yvBJ0YmC%2FG1E1dakU4%3D%0A&s=f36889bcf2abec136a10cfac401b7c3490797203f53586febf65668f3e69c6ab<https://urldefense.proofpoint.com/v1/url?u=http://www.heartlandcollaborative.org/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=rX%2BpwtxS62RFz%2BMe%2BGygIuxlYqsdJqSFMkXPQTg4Occ%3D%0A&m=6N55CscmrooxS4YIPaFQykFN9yvBJ0YmC%2FG1E1dakU4%3D%0A&s=f36889bcf2abec136a10cfac401b7c3490797203f53586febf65668f3e69c6ab>

Confidentiality Notice: This e-mail message, including any attachments, is for the sole use of the intended recipient(s) and may contain confidential and privileged information. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail and destroy all copies of the original message. [...]

FW: Announcement: HRSA Genetic Service Collaboratives Webinar on Genetic Services and the ACA June 19th at 4:00 PM EDT

Whitehead, Shona R. (HSC) — Mon, 3 Jun 2013 15:28:06 -0500

From: Sophie Stich [mailto:sstich@acmg.net]
Sent: Monday, June 03, 2013 3:19 PM
Subject: Announcement: HRSA Genetic Service Collaboratives Webinar on Genetic Services and the ACA June 19th at 4:00 PM EDT
Importance: High

Dear RC Project Directors, Project Managers and Federal Partners,
This is an announcement regarding an upcoming webinar for the "HRSA Genetic Service Collaboratives Webinar on Genetic Services and the Affordable Care Act". Meg Comeau from the Catalyst Center will be presenting on general information regarding genetic services and the Affordable Care Act implementation. This webinar will be on June 19th from 4:00 PM to 5:00 PM Eastern Standard. [...]

FW: The Genetics in Primary Care Institute Resource Highlight

Whitehead, Shona R. (HSC) — Fri, 31 May 2013 09:47:34 -0500

Thanks for sharing Mark!

Shona R. Whitehead
Asst. Project Manager
Heartland Genetics and Newborn Screening Collaborative
405-271-8001 ext. 42190

From: Smith, Mark A
Sent: Friday, May 31, 2013 9:43 AM
To: Whitehead, Shona R. (HSC)
Subject: FW: The Genetics in Primary Care Institute Resource Highlight

Mark A. Smith, M.S.
Resource and Family Support Coordinator
Nebraska Center on Disabilities
Munroe Meyer Institute for Genetics and Rehabilitation
985450 Nebraska Medical Center
Omaha, NE 68198-5450
(402) 559-5744
Fax (402) 559-5737
msmitha@unmc.edu<mailto:msmitha@unmc.edu> [...]

FW: DSCSHN Monthly Webinar 05-28-13: CATALYST CENTER

Whitehead, Shona R. (HSC) — Fri, 24 May 2013 10:06:59 -0500

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Friday, May 24, 2013 10:04 AM
Subject: FW: DSCSHN Monthly Webinar 05-28-13: CATALYST CENTER

The MCHB DSCSHN Monthly Webinar will be led by the Catalyst Center. The Catalyst Center is dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs. Please join us at 3:00pm (EST) on May 28, 2013. [...]

FW: Don't Miss This Livestream Event - Powerful Patient Data: Genomics and Family Health History

Whitehead, Shona R. (HSC) — Fri, 24 May 2013 08:58:19 -0500

From: James O'Leary
Sent: Friday, May 24, 2013 8:24 AM
Subject: Don't Miss This Livestream Event - Powerful Patient Data: Genomics and Family Health History

Email not displaying correctly? View it in your browser.[us5.campaign-archive2.com]<https://urldefense.proofpoint.com/v1/url?u=http://us5.campaign-archive2.com/?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D8ac566e3f5%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=tC9pNR9PSZK0Ja%2Bqd7DPx4Ns1pSXSJg2IEIQNTXP5bM%3D%0A&s=92d953104f92b9ba13a4ca28740aa95174f5c0b436fb2857ba96a70e37f02a65>

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Agenda[geneticalliance.us5.list-manage.com]<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D96f20dc170%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=tC9pNR9PSZK0Ja%2Bqd7DPx4Ns1pSXSJg2IEIQNTXP5bM%3D%0A&s=4432dffa6296b5e8fd53fa4ab738c28d2a8fb219e0564e576561359d1b4e5cb0> | Register[geneticalliance.us5.list-manage2.com]<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage2.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D7b684a2c90%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=tC9pNR9PSZK0Ja%2Bqd7DPx4Ns1pSXSJg2IEIQNTXP5bM%3D%0A&s=b270ce68710b40828475d269826c9ea269cd71802678d36754bd112339fdb440> | Lodging[geneticalliance.us5.list-manage.com]<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3De427c11dd7%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=tC9pNR9PSZK0Ja%2Bqd7DPx4Ns1pSXSJg2IEIQNTXP5bM%3D%0A&s=ef63f287494380b50754622b5666f48dbd54046964ceef7cb9e9bd69222f51a6> | Webcast[geneticalliance.us5.list-manage2.com]<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage2.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D69dd9a507b%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=tC9pNR9PSZK0Ja%2Bqd7DPx4Ns1pSXSJg2IEIQNTXP5bM%3D%0A&s=25a706c128df8321d62615499f34643416643bd8a7562039dd86e8008be88bae> | Forward to a friend[us5.forward-to-friend1.com]<https://urldefense.proofpoint.com/v1/url?u=http://us5.forward-to-friend1.com/forward?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D8ac566e3f5%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=tC9pNR9PSZK0Ja%2Bqd7DPx4Ns1pSXSJg2IEIQNTXP5bM%3D%0A&s=8eb930ee853acd164e5112cddd4ae587baacd3dae099c83f8d3e2bf8d0ee6379>

Live webcast is now available!
Powerful Patient Data: Genomics and Family Health History in Health IT
Salt Lake City | May 30-31, 2013 [...]

FW: New educational resource prepares clinicians for genomic medicine.

Whitehead, Shona R. (HSC) — Wed, 22 May 2013 14:48:57 -0500

From: James O'Leary
Sent: Wednesday, May 22, 2013 2:33 PM
Subject: New educational resource prepares clinicians for genomic medicine.

With genomic advances becoming increasingly pervasive in medical care, approaches to prepare clinicians to integrate genomics into their clinical practice are urgently needed. Three organizations teamed up to develop a hospital-based CME curriculum, "Medicine's Future: Genomics for Practicing Doctors," to help El Camino Hospital providers integrate genomic thinking into their practice. [...]

FW: Federal Advisory Committee Recommends Pompe Disease for Newborn Screening

Whitehead, Shona R. (HSC) — Fri, 17 May 2013 14:49:24 -0500

From: Natasha Bonhomme
Sent: Friday, May 17, 2013 2:46 PM
Subject: Federal Advisory Committee Recommends Pompe Disease for Newborn Screening

FOR IMMEDIATE RELEASE
May 17, 2013

Contact: Natasha Bonhomme
202-966-5557 x211
nbonhomme@geneticalliance.org<mailto:nbonhomme@geneticalliance.org>

Federal Advisory Committee Recommends Pompe Disease for Newborn Screening

WASHINGTON – May 17 2013 – In a long awaited meeting, the Secretary's Discretionary Advisory Committee for Heritable Disorders in Newborns and Children (DACHDNC), in a vote of 11 – 2, recommended the addition of Pompe Disease to the recommended uniform newborn screening panel (RUSP). This recommendation will be sent to the Secretary of Health and Human Services to [...]

FW: Registration Now Open for the First-Ever AAP CME Course on Genetics

Whitehead, Shona R. (HSC) — Fri, 17 May 2013 14:45:35 -0500

Thanks for sharing Kim!! Please share with your colleagues in Primary Care!

Shona R. Whitehead
Asst. Project Manager
Heartland Genetics and Newborn Screening Collaborative
405-271-8001 ext. 42190

From: Piper, Kimberly [IDPH]
Sent: Friday, May 17, 2013 2:43 PM
To: Whitehead, Shona R. (HSC); Dean, Lori
Subject: FW: Registration Now Open for the First-Ever AAP CME Course on Genetics [...]

FUNDING OPPORTUNITY

Dean, Lori — Wed, 15 May 2013 19:39:20 +0000

http://innovation.cms.gov/initiatives/Health-Care-Innovation-Awards/Round-2.html

Funded by the Affordable Care Act, the second round of the Health Care Innovation Awards differs from the first round in several respects. Specifically, in this second round, CMS is seeking new models in four categories:
* Models that are designed to rapidly reduce Medicare, Medicaid, and/or CHIP costs in outpatient and/or post-acute settings. Priority areas are diagnostic services, outpatient radiology, high-cost physician-administered drugs, home based services, therapeutic services, and post-acute services. [...]

FW: 1st meeting of the Secretary's Discretionary Advisory Committee on Heritable Disorders in Newborns and Children

Whitehead, Shona R. (HSC) — Fri, 10 May 2013 14:33:18 -0500

See attached for revised agenda.

Shona R. Whitehead
Asst. Project Manager
Heartland Genetics and Newborn Screening Collaborative
405-271-8001 ext. 42190

From: Whitehead, Shona R. (HSC)
Sent: Tuesday, May 07, 2013 2:54 PM
To: HEARTLAND@SPEEDY.OUHSC.EDU
Subject: 1st meeting of the Secretary's Discretionary Advisory Committee on Heritable Disorders in Newborns and Children

Announcement: The 1st meeting of the Secretary's Discretionary Advisory Committee on Heritable Disorders in Newborns and Children will be held as a webinar on May 16, 2013 and May 17, 2013 from 10:00 am to 2:00 pm [...]

FW: Genetic Alliance: May Webinars and Meetings Extravaganza

Whitehead, Shona R. (HSC) — Thu, 9 May 2013 11:25:56 -0500

From: Sharon Terry
Sent: Thursday, May 09, 2013 8:05 AM
Subject: May Webinars and Meetings Extravaganza

Genetic Alliance is in overdrive this month! May is packed with webinars and meetings to suit the diverse tastes and interests of our network. Read on to find out what's on the agenda, and dive into the discussions! [...]

1st meeting of the Secretary's Discretionary Advisory Committee on Heritable Disorders in Newborns and Children

Whitehead, Shona R. (HSC) — Tue, 7 May 2013 14:53:51 -0500

Announcement: The 1st meeting of the Secretary's Discretionary Advisory Committee on Heritable Disorders in Newborns and Children will be held as a webinar on May 16, 2013 and May 17, 2013 from 10:00 am to 2:00 pm

Registration: The meeting is open to the public. For more information on registration and webinar details, please visit the Advisory Committee's website: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders [...]

FW: Genetic Alliance: Webinars Galore

Whitehead, Shona R. (HSC) — Wed, 24 Apr 2013 11:54:55 -0500

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, April 23, 2013 10:00 AM
Subject: Genetic Alliance: Webinars Galore

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/694110/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nglacNxDRxnaUwR3ezjcP08xKcEkhHHQ0EipBvxS2hY%3D%0A&s=b8921324db4ae5d4837128686892291b2633c97ae1813f2a652914d0e3349cbf>

April 23, 2013

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/23apr13_myn.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/694110/255135/2613/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nglacNxDRxnaUwR3ezjcP08xKcEkhHHQ0EipBvxS2hY%3D%0A&s=ef4901dad362b82c36b1d4c11f650731bab72e399b449febf096279a0fd53a42>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/23apr13_grant.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/694110/255135/2614/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nglacNxDRxnaUwR3ezjcP08xKcEkhHHQ0EipBvxS2hY%3D%0A&s=2b09a12656439b41585efa7237adf457c7c05c0739761992844147b9f19fc28e>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/23apr13_he101.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/694110/255135/2615/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nglacNxDRxnaUwR3ezjcP08xKcEkhHHQ0EipBvxS2hY%3D%0A&s=314820a7c2d5285ca9a1639fc4426807a151dab83b3c761042d4436baa7cb4a5>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/23apr13_gp.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/694110/255135/2616/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nglacNxDRxnaUwR3ezjcP08xKcEkhHHQ0EipBvxS2hY%3D%0A&s=3f0eddaab5916b7e2d4779eb1c79a57cb5eb125b76145f95e3c6c17a0c79ccb1>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/23apr13_2020.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/694110/255135/2617/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nglacNxDRxnaUwR3ezjcP08xKcEkhHHQ0EipBvxS2hY%3D%0A&s=f1366b57b91e3511a2f685fd760436e601ea9b166d59a23e993d65174c59cd02>

This is a weekly bulletin from Genetic Alliance<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/694110/255135/868/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nglacNxDRxnaUwR3ezjcP08xKcEkhHHQ0EipBvxS2hY%3D%0A&s=a0e8a2dc80fd661b907456fdc5457defa067956561ad88c113e26b0f16007795>.

View other Genetic Alliance publications<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/694110/255135/879/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nglacNxDRxnaUwR3ezjcP08xKcEkhHHQ0EipBvxS2hY%3D%0A&s=49f57868401c4b403893a94850f011b3e43d942e34c8fb78dc3ab42ec7d733b2>

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FW: Friends of NCBDDD Webinar: Real-World Social Media Stories to Strengthen Your Efforts -- Tomorrow at 1pm ET

Whitehead, Shona R. (HSC) — Tue, 23 Apr 2013 11:49:31 -0500

From: Sharon Romelczyk [mailto:sromelczyk@geneticalliance.org]
Sent: Tuesday, April 23, 2013 11:44 AM
Subject: Friends of NCBDDD Webinar: Real-World Social Media Stories to Strengthen Your Efforts -- Tomorrow at 1pm ET

Good afternoon,

The event below may be of interest to you!

Have a good day.

Sharon

Sharon Romelczyk, MPA
Program Manager
National Genetics Education and Consumer Network (NGECN)
Genetic Alliance
4301 Connecticut Ave., Suite 404
Washington, DC 20008 [...]

FW: Upcoming webinar April 26, 2013

Whitehead, Shona R. (HSC) — Mon, 22 Apr 2013 09:55:38 -0500

From: Vaz, Sharon A. [mailto:SharonAV@health.ok.gov]
Sent: Monday, April 22, 2013 8:48 AM
Subject: FW: Upcoming webinar April 26, 2013
Importance: High

Sharon Vaz, MSGC, BSN
Chief, Screening and Special Services
Oklahoma State Department of Health
1000 N.E. 10th St, Room 709
OKC, OK 73117-1299
(405)271-6617; (405)271-4892 (fax)

From: Nursing Genomic Competency Listserv [mailto:NURSING_GENOMIC_COMP@LIST.NIH.GOV] On Behalf Of Jenkins, Jean (NIH/NHGRI) [C]
Sent: Monday, April 22, 2013 8:44 AM
To: NURSING_GENOMIC_COMP@LIST.NIH.GOV<mailto:NURSING_GENOMIC_COMP@LIST.NIH.GOV>
Subject: Upcoming webinar April 26, 2013
Importance: High [...]

FW: April 24th: Payment Reform and the ACA Webinar Presented By Meg Comeau

Whitehead, Shona R. (HSC) — Fri, 19 Apr 2013 09:11:35 -0500

Please share with anyone who might be interested.
From: Sophie Stich [mailto:sstich@acmg.net]
Sent: Thursday, April 18, 2013 7:35 PM
Subject: April 24th: Payment Reform and the ACA Webinar Presented By Meg Comeau
Importance: High

Dear RC Project Directors, Project Managers and Federal Partners,
Below is the registration information for the HRSA Genetic Service Collaboratives Webinar on Payment Reform and the Affordable Care Act presented by Meg Comeau from the Catalyst Center. This webinar will be April 24th from 5:00 PM to 6:00 PM EDT. Please share with your RCs, all are welcome to attend. It will also be recorded and [...]

FW: Register now: Registries for All - new webinar series

Whitehead, Shona R. (HSC) — Fri, 19 Apr 2013 09:10:10 -0500

From: Sharon Terry
Sent: Friday, April 19, 2013 9:05 AM
Subject: Register now: Registries for All - new webinar series

Email not displaying correctly? View it in your browser.<https://urldefense.proofpoint.com/v1/url?u=http://us5.campaign-archive2.com/?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3Db3b61521ad%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=245a3c3f39d7233ea94c92dbf5497a6a350d2c444145b7d07faf3f65b5eacea6>

[http://gallery.mailchimp.com/a9e55c5fcbe8bce63e2c83eb9/images/image_13661357904241366135792.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3Dc649dacbec%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=5dad61ca8c67d624bb19046293a054ee4cfde5bd82ac08e454dcf6a715c8dfb2>

Registries for All (Reg4ALL) is an innovative new registry platform that aims to accelerate research and improve health for all. Reg4ALL users begin by answering simple and engaging questions about their health, and then set specific privacy settings that reflect exactly how confortable they are with sharing that information. Two exciting features make Reg4ALL unique. First, users can share as much or as little as they want with as many [...]

FW: Recorded Learntelehealth.org Webinar Now Available

Whitehead, Shona R. (HSC) — Wed, 17 Apr 2013 14:18:40 -0500

From: Dean, Lori [mailto:LWDean@uams.edu]
Sent: Wednesday, April 17, 2013 2:16 PM
To: Whitehead, Shona R. (HSC)
Subject: FW: Recorded Learntelehealth.org Webinar Now Available

Lori Williamson Dean, MS, CGC, LGC
Department Chair and Assistant Professor, Department of Genetic Counseling
Program Manager, Heartland Genetics & NBS Collaborative
University of Arkansas for the Medical Sciences

Phone: 405-819-2135 or 501-526-7703

http://www.uams.edu/chrp/genetics<https://urldefense.proofpoint.com/v1/url?u=http://www.uams.edu/chrp/genetics&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=sVz1mRqY1uqA5Q7qGf8WSh5kK%2FCRRDE0pEoZ96Ui3gI%3D%0A&s=3d85061355e6a324a770fa6ee8d12f74ff4e37ff657814720391fc397cd6f76a>
http://www.heartlandcollaborative.org<https://urldefense.proofpoint.com/v1/url?u=http://www.heartlandcollaborative.org/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=sVz1mRqY1uqA5Q7qGf8WSh5kK%2FCRRDE0pEoZ96Ui3gI%3D%0A&s=6d7d1bdafb54ed7cd084e987c7b6723e0c512e6f357a986b99b132aebb0715f8>

Confidentiality Notice: This e-mail message, including any attachments, is for the sole use of the intended recipient(s) and may contain confidential and privileged information. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact [...]

FW: Announcing the NEW GeneticsinPrimaryCare.org

Whitehead, Shona R. (HSC) — Fri, 12 Apr 2013 13:39:22 -0500

From: Vaz, Sharon A. [mailto:SharonAV@health.ok.gov]
Sent: Friday, April 12, 2013 12:24 PM
Subject: FW: Announcing the NEW GeneticsinPrimaryCare.org

Sharon Vaz, MSGC, BSN
Chief, Screening and Special Services
Oklahoma State Department of Health
1000 N.E. 10th St, Room 709
OKC, OK 73117-1299
(405)271-6617; (405)271-4892 (fax)

From: lwilson@aap.mmsend.com<mailto:lwilson@aap.mmsend.com> [mailto:lwilson@aap.mmsend.com] On Behalf Of lwilson@aap.org<mailto:lwilson@aap.org>
Sent: Friday, April 12, 2013 11:11 AM
To: Vaz, Sharon A.
Subject: Announcing the NEW GeneticsinPrimaryCare.org [...]

FW: Register Today for Powerful Patient Data: Genomics and Family Health History in Health IT

Whitehead, Shona R. (HSC) — Thu, 11 Apr 2013 10:42:21 -0500

From: James O'Leary
Sent: Thursday, April 11, 2013 10:39 AM
Subject: Register Today for Powerful Patient Data: Genomics and Family Health History in Health IT

Email not displaying correctly? View it in your browser.<https://urldefense.proofpoint.com/v1/url?u=http://us5.campaign-archive1.com/?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D97eec37440%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=c%2FQw648saQPnLA%2F8U9hZs%2Bc4xCn6qUlCWElQjN9KklA%3D%0A&s=27618343e48d37bd60e21e166ef5dbd9f5509be0934fca2c9b13e58b41b99e63>

[http://gallery.mailchimp.com/a9e55c5fcbe8bce63e2c83eb9/images/image_13656944034321365694402.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D0e58256149%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=c%2FQw648saQPnLA%2F8U9hZs%2Bc4xCn6qUlCWElQjN9KklA%3D%0A&s=376939f5933ba098c1d58bb7b7981c51f726091d04a338727af01f281aae995b>

Agenda<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D80d1cf6505%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=c%2FQw648saQPnLA%2F8U9hZs%2Bc4xCn6qUlCWElQjN9KklA%3D%0A&s=2704fff709f70be98d0d90dc4de5b018832dd84ea8bb6d7e2e6ad898f05eb5a5> | Register<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3Db656fdfd94%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=c%2FQw648saQPnLA%2F8U9hZs%2Bc4xCn6qUlCWElQjN9KklA%3D%0A&s=a719deee768eb47d1b5c78eb85db58242dc2ee60298335384d084baf982b28a1> | Lodging<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage2.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D8237669a68%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=c%2FQw648saQPnLA%2F8U9hZs%2Bc4xCn6qUlCWElQjN9KklA%3D%0A&s=30e59fa051bc35b7fb3f39fe8ec806d235cdb7a269bed3c27c634cefed9272b4> | Forward to a friend<https://urldefense.proofpoint.com/v1/url?u=http://us5.forward-to-friend.com/forward?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D97eec37440%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=c%2FQw648saQPnLA%2F8U9hZs%2Bc4xCn6qUlCWElQjN9KklA%3D%0A&s=da29b3ad7e60853f1124b6c369f1e9a8f991018eb51d050d333a702ba325a7c2>

Registration is now open!
Powerful Patient Data: Genomics and Family Health History in Health IT
Salt Lake City | May 30-31, 2013 [...]

Re: Genetic Alliance: Advance Health Equity Now

Smith, Mark A — Tue, 9 Apr 2013 23:19:04 +0000

Hi Shona. Did members of the work group respond regarding who will represent HGRC on the GA committee? I'm good with whatever thev group decides.

Sent from my Verizon Wireless 4G LTE Smartphone

-------- Original message --------
From: "Whitehead, Shona R. (HSC)" <Shona-Whitehead@OUHSC.EDU>
Date: 04/09/2013 5:32 PM (GMT-06:00)
To: HEARTLAND@SPEEDY.OUHSC.EDU
Subject: FW: Genetic Alliance: Advance Health Equity Now [...]

FW: Genetic Alliance: Advance Health Equity Now

Whitehead, Shona R. (HSC) — Tue, 9 Apr 2013 16:30:24 -0500

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, April 09, 2013 10:00 AM
Subject: Genetic Alliance: Advance Health Equity Now

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693367/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=qYg4iH89de4PZthvL%2FSMEMLgj4EUKSeW4kofy0rRQvo%3D%0A&s=a60e68fd3de092e94b707efb3baa3de8e07100c10dff75f93746203f26a8fa40>

April 9, 2013

[http://www.geneticalliance.org/sites/default/files/ksc_assets/images/weekly_bulletin_banner.png]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693367/255135/873/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=qYg4iH89de4PZthvL%2FSMEMLgj4EUKSeW4kofy0rRQvo%3D%0A&s=c1d1c6535b1a02822444a46517db7e95a1c8fc47f4e0a8730bc84e3539e0ac26>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/09apr13_reg4all.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693367/255135/2552/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=qYg4iH89de4PZthvL%2FSMEMLgj4EUKSeW4kofy0rRQvo%3D%0A&s=e5573fea15168006d98a9ae5fc1733e3ac549ab49228a01da71569ed5366916d>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/09apr13_health.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693367/255135/2134/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=qYg4iH89de4PZthvL%2FSMEMLgj4EUKSeW4kofy0rRQvo%3D%0A&s=ae77d97404822c7632dc9dcc5e9da97162abbb8f9ab4f4a218acda71bff5cee0>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/09apr13_maped.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693367/255135/2594/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=qYg4iH89de4PZthvL%2FSMEMLgj4EUKSeW4kofy0rRQvo%3D%0A&s=378d72b7478dadabff7cff1db46954f1ef3ed4eb20ab4d1374cfb3f3fff788f0>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/09apr13_sachdnc.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693367/255135/2595/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=qYg4iH89de4PZthvL%2FSMEMLgj4EUKSeW4kofy0rRQvo%3D%0A&s=2f2ba79a7461c29a57528ae2cbf423c19c2d16bbb6e32b89f6584643357c2e40>

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Heartland Collaborative Webinar: The Genetics of Hearing Loss--May 6

Whitehead, Shona R. (HSC) — Tue, 9 Apr 2013 10:15:55 -0500

Please join us a for a May 6th webinar featuring a presentation from Dr Brad Schaefer about the genetics of hearing loss. Pre-registration is required. (Clicking the picture below will take you to the online registration page.)

[cid:image003.jpg@01CE350B.38D1A9A0]<https://www4.gotomeeting.com/register/992391551>

Shona R. Whitehead
Asst. Project Manager
Heartland Regional Coordinating Center
University of Oklahoma Health Sciences Center
1200 Children's Ave., Suite 12100
Oklahoma City, OK 73104 [...]

FW: SACHDNC Webinar - April 19 - Registration Open

Whitehead, Shona R. (HSC) — Tue, 9 Apr 2013 10:15:44 -0500

Tomorrow is the last day to register for the April 19th SACHDNC webinar. Registration information is below.

Shona R. Whitehead
Asst. Project Manager
Heartland Genetics and Newborn Screening Collaborative
405-271-8001 ext. 42190

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Thursday, March 28, 2013 3:42 PM
Subject: Fw: SACHDNC Webinar - April 19 - Registration Open

From: Sydney Vranna [mailto:SVranna@SeamonCorporation.com]
Sent: Thursday, March 28, 2013 03:48 PM
To: Sydney Vranna <SVranna@SeamonCorporation.com<mailto:SVranna@SeamonCorporation.com>>
Subject: SACHDNC Webinar - April 19 - Registration Open [...]

Webinar APRIL 16: Using Telemedicine to Provide Pediatric Genetic and Follow-Up Newborn Screening Services in Hawaii

Whitehead, Shona R. (HSC) — Mon, 8 Apr 2013 13:52:16 -0500

From: Freeman, Keith A
Sent: Tuesday, April 02, 2013 11:26 AM
To: Dean, Lori
Subject: RE: webinar on 16th

Lori,

Here is the flyer for the Thought Conference. Thanks!

Registration Page
https://www3.gotomeeting.com/register/337204102<https://urldefense.proofpoint.com/v1/url?u=https://www3.gotomeeting.com/register/337204102&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=Uw%2F%2F9sLMH%2BEZ%2B%2FAq3w3Mc3i4acBp9ObJBWih%2Ff5DjMU%3D%0A&s=c5f9a5ebe2fd9dc15ce3daf21167ce755bac3e40d883702bcd235e139f2e7fc9>

Learntelehealth.org Events Page
http://learntelehealth.org/events/<https://urldefense.proofpoint.com/v1/url?u=http://learntelehealth.org/events/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=Uw%2F%2F9sLMH%2BEZ%2B%2FAq3w3Mc3i4acBp9ObJBWih%2Ff5DjMU%3D%0A&s=e2ab7e3f411c30d8deaa5d81f46e607f8e2ffd4cb5dde22d91924aea02a611e3>

FW: Tomorrow's Webinar: What about Privacy and Progress in Whole Genome Sequencing? [Recommendation 1]

Whitehead, Shona R. (HSC) — Mon, 8 Apr 2013 12:48:21 -0500

From: Sharon Terry [mailto:sfterry@geneticalliance.org]
Sent: Monday, April 08, 2013 10:32 AM
Subject: Tomorrow's Webinar: What about Privacy and Progress in Whole Genome Sequencing? [Recommendation 1]

[http://upload.wikimedia.org/wikipedia/en/thumb/2/2f/GAcolor3002cm.jpg/200px-GAcolor3002cm.jpg]

What about Privacy and Progress
in Whole Genome Sequencing?

A Year-Long Webinar Series

Registration is free: http://www.geneticalliance.org/webinars<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693327/428560/97/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=fMueYjp5LrjW9tAJ3KCncSVCqljpsV79o9N85IKodTg%3D%0A&s=6b39760229666f8f674d71dd1370a481b56b49f658a98737fed1b8b8610b7ef5>
Missed a webinar? Check http://www.geneticalliance.org/webinars.archive<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693327/428560/1629/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=fMueYjp5LrjW9tAJ3KCncSVCqljpsV79o9N85IKodTg%3D%0A&s=0f910f521d708c3df6cd0fbb11f6dc7098b655ce5e2dbf8042354a97b0a0d9c9> for recording

The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing. In short, it concludes that “to realize the enormous promise that whole genome sequencing holds for advancing clinical care and the greater public good, individual interests in privacy must [...]

FW: Genetic Alliance Weekly Bulletin

Whitehead, Shona R. (HSC) — Tue, 2 Apr 2013 16:11:44 -0500

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, April 02, 2013 2:00 PM
Subject: What about Privacy and Progress in Whole Genome Sequencing?

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/693029/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=1u9t6VMDzeGOJAoJcoUV2GUQMylIyLwjH%2BOipHQfAns%3D%0A&s=6f694c6e1fca1773108855f2779bd0288db5b44fae63a35cde46d13fee6b63a3>

April 2, 2013

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Re: Abstract Deadlines for Upcoming National Meetings

Troxell, Robin M. — Mon, 1 Apr 2013 20:53:48 +0000

thanks I really appreciate this

Abstract Deadlines for Upcoming National Meetings

Whitehead, Shona R. (HSC) — Mon, 1 Apr 2013 14:53:59 -0500

Many great opportunities to showcase your work!! If you submit an abstract about Heartland funded work, please notify the HRCC.

Meeting Name and Dates

Abstract Deadline

Website

Invited Scientific Session Proposals
2014 Annual Clinical Genetics Meeting
American College of Medical Genetics and Genomics
March 25-29, 2014, Nashville, TN
http://ww2.aievolution.com/acm1401/files/content/docs/2014_ACMG_Proposal_Submission_Guidelines_PDF.pdf

4/26/13

http://ww2.aievolution.com/acm1401/

Annual Education Conference
National Society of Genetic Counselors (NSGC)
October 9-12, 2013; Anaheim, CA
http://www.nsgc.org/Education/2013AEC/tabid/501/Default.aspx [...]

FW: SACHDNC Webinar - April 19 - Registration Open

Whitehead, Shona R. (HSC) — Thu, 28 Mar 2013 15:43:13 -0500

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Thursday, March 28, 2013 3:42 PM
Subject: Fw: SACHDNC Webinar - April 19 - Registration Open

From: Sydney Vranna [mailto:SVranna@SeamonCorporation.com]
Sent: Thursday, March 28, 2013 03:48 PM
To: Sydney Vranna <SVranna@SeamonCorporation.com<mailto:SVranna@SeamonCorporation.com>>
Subject: SACHDNC Webinar - April 19 - Registration Open

[cid:image001.jpg@01CE2BCB.971CB700]<https://urldefense.proofpoint.com/v1/url?u=http://staging.blsmeetings.net/sachdnc/index.cfm&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=dSQxiBhkXfEAK4WOR3VsF0h6ZlAfRCxQCJPXMWg8EWY%3D%0A&s=9d1d2bd2b7aa754d71401e9faa878bdc2c0014d2d66fb89f2e7e41ef21e16e83>

30th MEETING OF THE SECRETARY'S ADVISORY COMMITTEE ON HERITABLE DISORDERS
IN NEWBORNS AND CHILDREN (SACHDNC) WEBINAR
April 19, 2013
9:30 a.m. – 4:00 p.m. [...]

FW: Genetic Alliance Weekly Bulletin

Whitehead, Shona R. (HSC) — Tue, 26 Mar 2013 11:37:39 -0500

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, March 26, 2013 10:00 AM
Subject: Children & Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/692534/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nYsDhAUGX3fKYzrMWjXPSBy3VLjvr7InzIsB9cB4T48%3D%0A&s=bf9f66558e3608c46a71f37b65ad5434e304c848b249405681466df1ee8784f7>

March 26, 2013

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View other Genetic Alliance publications<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/692534/255135/879/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nYsDhAUGX3fKYzrMWjXPSBy3VLjvr7InzIsB9cB4T48%3D%0A&s=99e11fd738f508c61859cd9e198d0fecafe0d40731e099a060564d6f4899af0e>

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FW: NCI R2R Cyber-Seminar on Public Health Genomics

Whitehead, Shona R. (HSC) — Tue, 26 Mar 2013 10:53:30 -0500

From: Vaz, Sharon A. [mailto:SharonAV@health.ok.gov]
Sent: Tuesday, March 26, 2013 10:41 AM
Subject: FW: NCI R2R Cyber-Seminar on Public Health Genomics

Sharon Vaz, MSGC, BSN
Chief, Screening and Special Services
Oklahoma State Department of Health
1000 N.E. 10th St, Room 709
OKC, OK 73117-1299
(405)271-6617; (405)271-4892 (fax)

From: Schully, Sheri (NIH/NCI) [E]
Sent: Monday, March 25, 2013 3:05 PM
To: List PHGIG
Subject: NCI R2R Cyber-Seminar on Public Health Genomics [...]

FW: HRSA DSCSHN Monthly Webinar 03-26-13: NICHQ fro the Sickle Cell Treatment Demonstration and NBS Programs.

Whitehead, Shona R. (HSC) — Mon, 25 Mar 2013 10:54:03 -0500

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Monday, March 25, 2013 10:53 AM
Subject: FW: HRSA DSCSHN Monthly Webinar 03-26-13: NICHQ fro the Sickle Cell Treatment Demonstration and NBS Programs.

The DSCSHN Monthly Webinar for March will be led by The National Initiative for Children's Healthcare Quality (NICHQ) which serves as the National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Program and the National Coordinating and Evaluation Center for the Sickle Cell Disease Newborn Screening Program. These two centers are unified under the Working to Improve Sickle Cell Healthcare (WISCH) project. Please join us at 3:00pm (EST) on March [...]

FW: Webinar Announcement: Introduction to NewSTEPs

Dean, Lori — Wed, 20 Mar 2013 13:28:31 +0000

From: bounce-1049173-8125672@lists.aphl.org [mailto:bounce-1049173-8125672@lists.aphl.org] On Behalf Of Singh, Sikha | APHL
Sent: Wednesday, March 20, 2013 12:45 AM
To: aphl-NewSTEPs
Subject: [aphl-newsteps] Webinar Announcement: Introduction to NewSTEPs

Dear Public Health Partners and Newborn Screening Stakeholders:

We hope this message finds you well. The purpose of this message is to invite you to participate in an information sharing webinar hosted by NewSTEPs. As we continue to enhance relationships with public health and newborn screening stakeholders, we hope that resources described in the webinar will be valuable for you. [...]

FW: Baby's First Test Continues to Fuel Innovative Programs

Whitehead, Shona R. (HSC) — Tue, 19 Mar 2013 16:46:34 -0500

From: Elizabeth Stark [mailto:estark@geneticalliance.org]
Sent: Thursday, March 07, 2013 8:30 AM
Subject: Baby's First Test Continues to Fuel Innovative Programs

FOR IMMEDIATE RELEASE
March 7, 2013

Contact: Elizabeth Stark, MS, CGC
202-966-5557 x207
Elizabeth@BabysFirstTest.org<mailto:Elizabeth@BabysFirstTest.org>

Baby's First Test Continues to Fuel Innovative Programs
Announces 2013 Challenge Award Recipients

WASHINGTON, DC - March 7, 2013 - Baby's First Test, a Genetic Alliance project, is pleased to announce partnerships with five institutions that will carry out innovative projects increasing awareness of newborn screening or implementing novel solutions to challenges in the newborn screening system. Each project will receive funding of up to $20,000. [...]

Lynch Syndrom Awareness Day, Friday March 22

Debra Collins — Tue, 19 Mar 2013 17:20:34 +0000

The Kansas governor has proclaimed March 22nd as Lynch Syndrome public awareness day, as have governors in a other states.

Our patient leading this effort has gotten a billboard posted in Topeka, has done radio spots (on 99.3 and 104.0), and hopes to meet with interested journalists / legislators / others in Topeka this Friday. [...]

FW: One Stop Shopping for All Diseases: Genetic Alliance Launches Disease InfoSearch

Whitehead, Shona R. (HSC) — Tue, 19 Mar 2013 11:46:00 -0500

From: Sharon Terry [mailto:sterry@geneticalliance.org]
Sent: Tuesday, March 19, 2013 9:44 AM
Subject: One Stop Shopping for All Diseases: Genetic Alliance Launches Disease InfoSearch

FOR IMMEDIATE RELEASE
March 19, 2013

Contact: Lauren Youngborg, MS, CGC
202-966-5557 x219
lyoungborg@geneticalliance.org<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/692185/428560/2580/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=cgXO%2F1UIb0Z3ARbX5AG%2FMHaJjmW5Q3hP1Sli%2FPDDg3o%3D%0A&s=1461bb828b51e3bb95332c4c27bea2f0bbb3cd7463f394f233b358726b3eb2bf>

One Stop Shopping for All Diseases: Genetic Alliance Launches Disease InfoSearch

WASHINGTON, DC - March 19, 2013 - Disease InfoSearch (www.DiseaseInfoSearch.org), a one-stop shop for information and engagement on more than 13,000 conditions, launched today. Disease InfoSearch connects healthcare providers, researchers and the general public with support groups, relevant and timely peer-reviewed articles, open and appropriate IRB-approved clinical trials, and general disease information. [...]

FW: March Focus Facts with Attached PDF

Whitehead, Shona R. (HSC) — Tue, 19 Mar 2013 11:42:50 -0500

From: Vaz, Sharon A. [mailto:SharonAV@health.ok.gov]
Sent: Tuesday, March 19, 2013 11:16 AM
To: Whitehead, Shona R. (HSC)
Subject: FW: March Focus Facts with Attached PDF

Some national articles of interest to Heartland
Thank you
Sharon

Sharon Vaz, MSGC, BSN
Chief, Screening and Special Services
Oklahoma State Department of Health
1000 N.E. 10th St, Room 709
OKC, OK 73117-1299
(405)271-6617; (405)271-4892 (fax)

From: Focus Facts Newsletter [mailto:FOCUSFACTS@SPEEDY.OUHSC.EDU] On Behalf Of Fenrick, Melissa D (HSC)
Sent: Friday, March 15, 2013 12:06 PM
To: FOCUSFACTS@SPEEDY.OUHSC.EDU<mailto:FOCUSFACTS@SPEEDY.OUHSC.EDU>
Subject: March Focus Facts with Attached PDF [...]

FW: New Medscape Video: Screening Newborns for Critical Congenital Heart Disease

Whitehead, Shona R. (HSC) — Mon, 18 Mar 2013 14:07:07 -0500

From: Vaz, Sharon A. [mailto:SharonAV@health.ok.gov]
Sent: Monday, March 18, 2013 2:06 PM
Subject: FW: New Medscape Video: Screening Newborns for Critical Congenital Heart Disease

Sharon Vaz, MSGC, BSN
Chief, Screening and Special Services
Oklahoma State Department of Health
1000 N.E. 10th St, Room 709
OKC, OK 73117-1299
(405)271-6617; (405)271-4892 (fax)

From: NCBDDD/Birth Defects Surveillance [mailto:BIRTH-DEFECTS-SURV@LISTSERV.CDC.GOV] On Behalf Of Mai, Cara (CDC/ONDIEH/NCBDDD)
Sent: Monday, March 18, 2013 1:52 PM
To: BIRTH-DEFECTS-SURV@LISTSERV.CDC.GOV<mailto:BIRTH-DEFECTS-SURV@LISTSERV.CDC.GOV>
Subject: New Medscape Video: Screening Newborns for Critical Congenital Heart Disease [...]

FW: Announcing the NEW GeneticsinPrimaryCare.org

Whitehead, Shona R. (HSC) — Fri, 15 Mar 2013 13:51:28 -0500

From: Vaz, Sharon A. [mailto:SharonAV@health.ok.gov]
Sent: Friday, March 15, 2013 1:23 PM
Subject: FW: [NBS-LIST] Announcing the NEW GeneticsinPrimaryCare.org

Sharon Vaz, MSGC, BSN
Chief, Screening and Special Services
Oklahoma State Department of Health
1000 N.E. 10th St, Room 709
OKC, OK 73117-1299
(405)271-6617; (405)271-4892 (fax)

From: Newborn Screening Inquiry/Discussion List [mailto:NBS@LISTS.UTHSCSA.EDU] On Behalf Of Natalie Mikat-Stevens
Sent: Friday, March 15, 2013 12:15 PM
To: NBS@LISTS.UTHSCSA.EDU<mailto:NBS@LISTS.UTHSCSA.EDU>
Subject: [NBS-LIST] Announcing the NEW GeneticsinPrimaryCare.org [...]

FW: Save the Date: May 30-31, Powerful Patient Data: Genomics and FHH in Health IT

Whitehead, Shona R. (HSC) — Fri, 15 Mar 2013 10:56:57 -0500

From: James O'Leary [mailto:joleary@geneticalliance.org]
Sent: Friday, March 15, 2013 9:32 AM
Subject: Save the Date: May 30-31, Powerful Patient Data: Genomics and FHH in Health IT

[http://upload.wikimedia.org/wikipedia/en/thumb/2/2f/GAcolor3002cm.jpg/200px-GAcolor3002cm.jpg] [http://www.geneticalliance.org/sites/default/files/ksc_assets/images/cgi.jpg]

Genetic Alliance and Intermountain Healthcare are excited to announce
Powerful Patient Data: Genomics and Family Health History in Health IT,
a two-day summit to take place in Salt Lake City, Utah on May 30-31, 2013. [...]

Advocate Call

Johnson, Holly A — Thu, 14 Mar 2013 15:03:17 +0000

Do we have a call right now??

HOLLY JOHNSON
Department of Imaging & Radiation Sciences*
UAMS Slot 563, 4301 W. Markham St.
Little Rock, AR 72205
(501) 686-5948 phone
(501) 526-7975 fax
hajohnson2@uams.edu<mailto:hajohnson2@uams.edu>
Divisions of Radiologic Imaging Sciences, Nuclear Medicine Imaging Sciences, Diagnostic Medical Sonography, Radiation Therapy, & Medical Dosimetry

From: Communication for the Heartland Regional Genetics Group [mailto:HEARTLAND@SPEEDY.OUHSC.EDU] On Behalf Of Whitehead, Shona R. (HSC)
Sent: Tuesday, March 12, 2013 2:00 PM
To: HEARTLAND@SPEEDY.OUHSC.EDU
Subject: FW: Genetic Alliance Weekly Bulletin--Reg4ALL: Add Your Piece to the Puzzle! [...]

FW: Genetic Alliance Weekly Bulletin--Reg4ALL: Add Your Piece to the Puzzle!

Whitehead, Shona R. (HSC) — Tue, 12 Mar 2013 14:00:03 -0500

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, March 12, 2013 10:00 AM
Subject: Genetic Alliance Weekly Bulletin--Reg4ALL: Add Your Piece to the Puzzle!

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=0e55d57efb6c98a50e79c06e41c0e1db959c449d0b64c76577aa58af297562dd>

March 12, 2013

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/12mar13_my46.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/2559/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=e816a4fce4523260846e8e50199b4b38cee54a537e56fdc50de1a6de1520e378>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/05mar13_reg4all.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/2552/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=fccfd4e38a5875654221b6754db1ce763aa4cd6a891f9359868f6eaa51d41e08>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/12mar13_communication.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/2560/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=c7d6111ef7f98a84153625d3e5fda85476cef04e42cd908fb06861c5df654ebe>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/12mar13_sparc.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/2561/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=38c4e3bb9f75862a8d9ae4a11eaf64143de54568227acdb65a44e0e97f5e05a0>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/12mar13_myn.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/2562/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=d2ad9517495b5a1c3973cad5d34896038a003c813f2efb126e80c6aabd478b4d>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/12mar13_dna.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/2563/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=3bb2e5d686c761348b7f1456faafe393953fc63cdbb2a4bf1eb1e6b5a5c55c63>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/12mar13_political.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/2564/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=747e1e6a70c0d07fcb1b156a05f357efe07386c77f51601aa896640c8a708823>

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/12mar13_omh.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/2566/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=96ff256b1edc8744be3150c47adc6247a9ad2e13020b8d63f6e48a04150fcbd2>

This is a weekly bulletin from Genetic Alliance<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/868/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=03953c110d1cd53a13fd0c947dcf89649e10a71683232f8024104fab6750dd5a>.

View other Genetic Alliance publications<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691668/255135/879/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=TfD%2FiTNB%2FxdiVdhDt98NaVsxqoRxcnyTWt9nVifG2g8%3D%0A&s=7bc49e98ac1aa9aa434c0a8efe0f4432aa293ca3fe3681bf5ab8fd491a524c95>

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FW: Webinar Series: What about Privacy and Progress in Whole Genome Sequencing? [March]

Whitehead, Shona R. (HSC) — Mon, 11 Mar 2013 14:13:45 -0500

From: Sharon Terry [mailto:sterry@geneticalliance.org]
Sent: Monday, March 11, 2013 12:28 PM
Subject: Webinar Series: What about Privacy and Progress in Whole Genome Sequencing? [March]

[http://upload.wikimedia.org/wikipedia/en/thumb/2/2f/GAcolor3002cm.jpg/200px-GAcolor3002cm.jpg]

What about Privacy and Progress
in Whole Genome Sequencing?

A Year-Long Webinar Series

Registration is free: http://www.geneticalliance.org/webinars<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691592/428560/97/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=7LPZg8aaI7MMV7eA1lINjqCyQG9tr4bASvePciEU9%2FQ%3D%0A&s=85f2fe1e0b87e97611d0a94fa810902a8fcacbd9de5cdd6579153cdaf4530066>
Missed a webinar? Check http://www.geneticalliance.org/webinars.archive<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/691592/428560/1629/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=7LPZg8aaI7MMV7eA1lINjqCyQG9tr4bASvePciEU9%2FQ%3D%0A&s=875bbfa7778c738c0bb065eaff9907783364f2e087f375501b971f50206e26de> for recording

The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing. In short, it concludes that "to realize the enormous promise that whole genome sequencing holds for advancing clinical care and the greater public good, individual interests in privacy must be [...]

FW: 2nd Annual Conf to Eliminate Health Disparities in Genomic Medicine- Abstract Submission Deadline March 15th!

Whitehead, Shona R. (HSC) — Fri, 8 Mar 2013 13:56:13 -0600

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Friday, March 08, 2013 11:23 AM
Subject: FW: 2nd Annual Conf to Eliminate Health Disparities in Genomic Medicine- Abstract Submission Deadline March 15th!

[cid:image001.jpg@01CE1B5B.CAF1EF30]<https://urldefense.proofpoint.com/v1/url?u=http://geneticsawareness.org/2013-health-disparities-conference&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=lxUILA7O1freublqPjNOw3i4rTfVnAqpjlhUEvxMe1I%3D%0A&s=caa9e776c0ced2fbb5b9153c94703f7b76b6059c882049bed48e9273fdef233a>[cid:image002.jpg@01CE1B5B.CAF1EF30]<https://urldefense.proofpoint.com/v1/url?u=http://geneticsawareness.org/2013-health-disparities-conference&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=lxUILA7O1freublqPjNOw3i4rTfVnAqpjlhUEvxMe1I%3D%0A&s=caa9e776c0ced2fbb5b9153c94703f7b76b6059c882049bed48e9273fdef233a>[cid:image003.jpg@01CE1B5B.CAF1EF30]<https://urldefense.proofpoint.com/v1/url?u=http://geneticsawareness.org/2013-health-disparities-conference&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=lxUILA7O1freublqPjNOw3i4rTfVnAqpjlhUEvxMe1I%3D%0A&s=caa9e776c0ced2fbb5b9153c94703f7b76b6059c882049bed48e9273fdef233a>

Why We Can't Wait:

2nd Annual Conference to Eliminate Health Disparities in Genomic Medicine:

The role of industry, foundations, non-profits, and government

May 29-31, 2013 ~ Palace Hotel ~ San Francisco, California [...]

FW: Announcing: Preview Launch for Registries for ALL!

Whitehead, Shona R. (HSC) — Thu, 28 Feb 2013 14:47:48 -0600

From: Sharon Terry [mailto:sterry@geneticalliance.org]
Sent: Wednesday, February 27, 2013 4:53 PM
Subject: Announcing: Preview Launch for Registries for ALL!

[cid:C3A02DD2-4FB7-431E-A629-ACF8130C79AE]

Rare Disease Day - the preview launch for Registries for Al<https://urldefense.proofpoint.com/v1/url?u=http://www.Reg4ALL.org&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=%2FjBfQsJFYGdgiF7wfxIfwkRMIXkwWru8IP4KeA%2FMXoU%3D%0A&s=76bb58c71bd75f06f605fa67b54e974335fe079cf29e86a8ec4856d03dc39a16>l<https://urldefense.proofpoint.com/v1/url?u=http://www.Reg4ALL.org&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=%2FjBfQsJFYGdgiF7wfxIfwkRMIXkwWru8IP4KeA%2FMXoU%3D%0A&s=76bb58c71bd75f06f605fa67b54e974335fe079cf29e86a8ec4856d03dc39a16>

Dear all,

We all know that there is not enough information or resources to support diagnostic and drug development on a scale to match our dreams. It is time to change that. We are finding ways to improve health with Registries for ALL. [...]

FW: NIH-NICHD-CDBPM-2013-13, Sources Sought: Pilot Newborn Screening Studies of Novel Technologies in a High Throughput Environment

Whitehead, Shona R. (HSC) — Mon, 25 Feb 2013 13:52:55 -0600

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Monday, February 25, 2013 1:51 PM
Subject: FW: NIH-NICHD-CDBPM-2013-13, Sources Sought: Pilot Newborn Screening Studies of Novel Technologies in a High Throughput Environment

Solicitation Number:
NIH-NICHD-CDBPM-2013-13
Notice Type:
Synopsis:
Added: Feb 21, 2013 4:26 pm
Pilot Newborn Screening Studies of Novel Technologies in a High Throughput Environment
Background:

The goal of newborn screening is to detect potentially fatal or disabling conditions in newborns, thereby providing a window of opportunity for early treatment, often while the child is still asymptomatic. Such early detection and treatment can have a profound impact on the clinical severity of [...]

FW: DSCSHN Monthly Webinar 02-26-13, 3-4 PM, Nat'l Ctr for Ease of Use of Community-Based Services

Whitehead, Shona R. (HSC) — Fri, 22 Feb 2013 13:21:29 -0600

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Friday, February 22, 2013 1:14 PM
Subject: DSCSHN Monthly Webinar 02-26-13, 3-4 PM, Nat'l Ctr for Ease of Use of Community-Based Services

The DSCSHN Monthly Webinar for February is the National Center for Ease of Use of Community-Based Services. This Center will advance policy and practice solutions that will improve the ease of use of community based services by developing a state leadership network, promoting partnerships and recognize leading communities. Please join us at 3:00pm (EST) on February 26, 2013. [...]

FW: American Heart Association Focuses on Newborn Screening for Congenital Heart Defects

Whitehead, Shona R. (HSC) — Fri, 22 Feb 2013 09:07:28 -0600

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Friday, February 22, 2013 8:57 AM
Subject: FW: American Heart Association Focuses on Newborn Screening for Congenital Heart Defects

American Heart Association Focuses on Newborn Screenings for Congenital Heart Defects
By American Heart Association<http://www.sacbee.com/search_results/?sf_pubsys_story_byline=American%20Heart%20Association&link_location=top>
Published: Thursday, Feb. 21, 2013
Pulse Oximetry can save lives by detecting heart defects otherwise missed
CHICAGO, Feb. 21, 2013 /PRNewswire-USNewswire/ -- The American Heart Association (AHA) is focusing its advocacy efforts across the Midwest on the use of pulse oximetry screening ("pulse ox") to detect congenital heart defects in newborns.
(Photo: http://photos.prnewswire.com/prnh/20130221/DC64338)
"Pulse ox screening is non-invasive, inexpensive and [...]

Re: FW: Upcoming SCID Call on February 22nd

Kunal Sanghavi — Thu, 21 Feb 2013 11:22:14 -0500

Hi Shona,

Thank you so much for forwarding the emails to me. I learned a lot about the advocacy workgroup at Heartland. I appreciate your willingness to include me in your mailing list.
Hope your laptop is working!

Have a great day.
Regards,
Kunal

----- Original Message -----
From: "Whitehead, Shona R. (HSC)" <Shona-Whitehead@OUHSC.EDU>
Date: Thursday, February 21, 2013 11:18 am
Subject: FW: Upcoming SCID Call on February 22nd
To: HEARTLAND@SPEEDY.OUHSC.EDU [...]

FW: Upcoming SCID Call on February 22nd

Whitehead, Shona R. (HSC) — Thu, 21 Feb 2013 10:16:59 -0600

From: Irina Smotrich [mailto:ismotrich@acmg.net]
Sent: Wednesday, February 20, 2013 8:56 AM
To: Amy Brower; SCID National Monthly Call
Subject: Upcoming Call on February 22nd

Good morning workgroup members,

Please see the below webinar information for the upcoming SCID call.

Call in: 866.671.5988
Conference Code: 841 900 2082

SCID National Monthly Conference Call

Join us for a Webinar on February 22 [...]

FW: NBSTRN Virtual Repository Demo

Whitehead, Shona R. (HSC) — Thu, 21 Feb 2013 10:16:22 -0600

From: bounce-1047521-8125672@lists.aphl.org<mailto:bounce-1047521-8125672@lists.aphl.org> [mailto:bounce-1047521-8125672@lists.aphl.org] On Behalf Of Amy Hoffman
Sent: Wednesday, February 20, 2013 9:03 AM
To: aphl-NewSTEPs
Subject: [aphl-newsteps] NBSTRN Virtual Repository Demo

Join our LIVE presentation of the Virtual Repository of Dried Blood Spots (VRDBS) on Thursday, February 21st, 2013 at 2:00pm Eastern. We will show you how easy it is to use this centralized, web-based tool and give you the opportunity to ask questions about the system. [...]

FW: Genetic Alliance Weekly Bulletin

Whitehead, Shona R. (HSC) — Tue, 19 Feb 2013 16:40:57 -0600

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, February 19, 2013 10:00 AM
Subject: Genetic Alliance Weekly Bulletin

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=c89d1bb49de69828af8db89372f6bf51cf9a05166c8c383a4613c92886a47c57>

February 19, 2013

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_genetic.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2532/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=3c7be0da2042d19613aa742b0959b4469e3511c7a40199927ea3cdac1c3f9e3c>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_biomakers.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2533/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=5e54bd5342b82a89dadae9ef633d3a25efd12da7c8181cf01631a19100960191>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_clinic.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2534/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=d3cf035675ce432738647438b048c1001b1a0d770e1d8dccaaab74cafd15d952>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_ollibean.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2535/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=a8d371ed14d2819feb42eefc46abf3aaac2d25c19f5a67b62adc295efc0b87c8>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_myn.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2536/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=e8ec19654c101263c1db2b12c0f83d41c6ccc4b0fd089bb41b4dd58cdd319948>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_consent.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2537/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=d9e455e4c709dea481001aff9e20358021b7fa7cad9e8f4f076ef32f47376b93>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_innovation.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2538/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=b758600e74f1d1520989a9357b89edd52daa075d9bfc6653a8ac3e196b4fa68f>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_isca.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2539/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=758dbb1dd16bc1d8b930b7a32d933272e2bb57de317220ffed6b31f2b0255786>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/19feb13_macy.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/2540/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=96bd619a1ac794758f9fc68c6891caa9e8685214d9be00044a0c7f87c5364952>

This is a weekly bulletin from Genetic Alliance<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/690372/255135/868/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=nhYLu2ZGmq9xoEDTdYooDkFFvNZNugY7GdeNz2CI5Qo%3D%0A&s=78b7dfaea285f5d3c5a385dc024790c521dff0b9e58a9393df85a9dc535901a1>.

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remove email address

Mary Michaels — Mon, 18 Feb 2013 15:22:13 +0000

Good morning. Please remove this email address from all Heartland group communications: mary.michaels@heart.org<mailto:mary.michaels@heart.org>

I am changing jobs at the end of February and will no longer be at this address. Thank you for your assistance.

Mary

FW: Info about Genetests that might be of interest

Whitehead, Shona R. (HSC) — Thu, 14 Feb 2013 17:14:43 -0600

From: Troxell, Robin M.
Sent: Monday, February 11, 2013 9:41 AM
To: Whitehead, Shona R. (HSC)
Subject: FW: Info about Genetests that might be of interest

From: Bocian Maureen
Sent: Sunday, February 10, 2013 7:50 PM
Subject: Important re ACMG conference

Dear Colleagues:

The following is especially important for those of you who plan to attend the ACMG in Phoenix next month, but it has relevance for all of us in clinical genetics and genetic counseling. [...]

Heartland Collaborative Webinar: Demystifying Genetic Counselor Licensure

Whitehead, Shona R. (HSC) — Tue, 12 Feb 2013 14:49:43 -0600

Please forward this message or attached flyer to anyone who might be interested in participating.

Shona R. Whitehead
Asst. Project Manager
Heartland Genetics and Newborn Screening Collaborative
405-271-8001 ext. 42190

[http://www4.gotomeeting.com/g2w/images/666209727/342074170212007727/embed.jpg]

Demystifying Genetic Counselor Licensure

Join us for a Webinar on March 29

[http://img.gotomeeting.com/g2mimages/webinar/themes/basic/button_registerNow.gif]<https://urldefense.proofpoint.com/v1/url?u=https://www4.gotomeeting.com/register/666209727&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=jWUKgE7salcl1HfcddffZRqMYjH5a5I%2FTS7J3KQhvKE%3D%0A&s=1deeff704f02f35b31ddd4cf2818fb9f1514843e1438c26047456a2000985d6a>

Space is limited.
Reserve your Webinar seat now at:
https://www4.gotomeeting.com/register/666209727<https://urldefense.proofpoint.com/v1/url?u=https://www4.gotomeeting.com/register/666209727&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=jWUKgE7salcl1HfcddffZRqMYjH5a5I%2FTS7J3KQhvKE%3D%0A&s=1deeff704f02f35b31ddd4cf2818fb9f1514843e1438c26047456a2000985d6a>

The Clinical Services Work Group of the Heartland Genetics and Newborn Screening Collaborative invites you to join a region-wide webinar to learn more about how to pursue Genetic Counselor Licensure in your state. [...]

FW: Genetic Alliance Weekly Bulletin--Sign on to Save SACHDNC

Whitehead, Shona R. (HSC) — Tue, 12 Feb 2013 14:00:32 -0600

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, February 12, 2013 10:00 AM
Subject: Genetic Alliance Weekly Bulletin--Sign on to Save SACHDNC

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/689947/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=r6b89zOw2v8d2kf9YRmL%2Bux8mzEcfaEPU6KtVbAMUmE%3D%0A&s=394990363aada39a2261c1ee0e8490fa642b166db0ea22a7e88f751548fc30cb>

February 12, 2013

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This is a weekly bulletin from Genetic Alliance<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/689947/255135/868/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=r6b89zOw2v8d2kf9YRmL%2Bux8mzEcfaEPU6KtVbAMUmE%3D%0A&s=4d5fbedd8f0f86a83318900eb544cb870028ae6159b056e4294049ed2b4c8782>.

View other Genetic Alliance publications<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/689947/255135/879/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=r6b89zOw2v8d2kf9YRmL%2Bux8mzEcfaEPU6KtVbAMUmE%3D%0A&s=aabd0ae8f404b1b7c3959395ed95e7be2d1d89d50641a84a813adcc7157ce4ab>

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FW: JNS Special Genomics Issue Webinars Registration FYI

Whitehead, Shona R. (HSC) — Mon, 11 Feb 2013 14:53:58 -0600

Thanks for sharing Sharon!
From: Vaz, Sharon A. [mailto:SharonAV@health.ok.gov]
Sent: Monday, February 11, 2013 2:53 PM
To: Whitehead, Shona R. (HSC)
Subject: FW: JNS Special Genomics Issue Webinars Registration FYI

From: Nursing Genomic Competency Listserv [mailto:NURSING_GENOMIC_COMP@LIST.NIH.GOV] On Behalf Of Jenkins, Jean (NIH/NHGRI) [C]
Sent: Monday, February 11, 2013 2:49 PM
To: NURSING_GENOMIC_COMP@LIST.NIH.GOV<mailto:NURSING_GENOMIC_COMP@LIST.NIH.GOV>
Subject: JNS Special Genomics Issue Webinars Registration FYI [...]

FW: Call For Abstracts: Advancing Quality Improvement Science for Children's Health Care Research Conference 2013

Whitehead, Shona R. (HSC) — Wed, 6 Feb 2013 16:41:55 -0600

Please forward to colleagues where appropriate.

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Wednesday, February 06, 2013 3:41 PM
Subject: Call For Abstracts: Advancing Quality Improvement Science for Children's Health Care Research Conference 2013

Dear Federal Colleagues:

Would you be able to disseminate news of this opportunity to your colleagues, grantees, and contractors who are doing QI with a research/evaluation lens? You will find more guidance in the announcement below.
FYI, AHRQ is supporting this conference through its conference grant program. I am a member of the conference planning committee.
Any questions, please let me, Allison at APA, or Judy Shaw [...]

FW: Medical Home HOW TO Webinar Series - Nat'l Center for Medical Home Implemenation

Whitehead, Shona R. (HSC) — Wed, 6 Feb 2013 15:38:22 -0600

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Wednesday, February 06, 2013 3:25 PM
Subject: FW: Medical Home HOW TO Webinar Series - Nat'l Center for Medical Home Implemenation

Please click here<http://www.mmsend53.com/link.cfm?r=29911422&sid=22644633&m=2487316&u=AAPorg&j=12980886&s=http://www.magnetmail.net/actions/email_web_version.cfm?recipient_id=29911422&message_id=2487316&user_id=AAPorg&group_id=471660&jobid=12980886> if you have problems viewing this message or if using a mobile device.
[http://images.magnetmail.net/images/template/Template_Library/BasicNewsletters/social_light.jpg]

Medical Home in Pediatrics
The HOW TO Webinar Series

Brought to you by the National Center for Medical Home Implementation (NCMHI) [...]

FW: ACA update- please share

Whitehead, Shona R. (HSC) — Wed, 6 Feb 2013 15:07:57 -0600

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Wednesday, February 06, 2013 3:05 PM
Subject: FW: ACA update- please share

As you know, the Affordable Care Act , the health care law passed in 2010, creates unprecedented opportunities for millions of Americans to access health insurance coverage. A healthier country is one in which more Americans are able to access the care they need to prevent the onset of disease and manage disease when it is present. The Affordable Care Act creates new state-based marketplaces to offer millions of Americans new access to affordable health insurance coverage. In addition, the law helps [...]

FW: Newborn Screening Quarterly Newsletter Issue #8

Whitehead, Shona R. (HSC) — Wed, 6 Feb 2013 09:37:54 -0600

From: Natasha Bonhomme [mailto:nbonhomme@geneticalliance.org]
Sent: Tuesday, February 05, 2013 11:05 PM
Subject: Newborn Screening Quarterly Newsletter Issue #8

[http://www.geneticalliance.org/sites/default/files/ksc_assets/images/bft_logo.png]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/689555/228877/2034/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=S%2FooQhZWLUutfTYgbo0Y1SgVxWmzM2xHzfIJY%2F4cEHw%3D%0A&s=9a7c5fa5e5e901eef690e0bc0b14d0c262de69645d9d4b37ff17d14ade973739>
Newborn Screening
Quarterly Newsletter
Brought to you by Genetic Alliance
February 6, 2013 Issue #8
IN THIS ISSUE

2012 Consumer Task Force

Challenge Award Program

2013 Consumer Task Force

Severe Combined Immunodeficiency

SACHDNC 29th Meeting

NBS in the News

Posters and Presentations

Contact

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/689555/228877/2033/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=S%2FooQhZWLUutfTYgbo0Y1SgVxWmzM2xHzfIJY%2F4cEHw%3D%0A&s=3e64cb2fad0fdc7aa8d2b55b12f168bd373c50f19d1891df70e464180e81f6ce>
2012 Consumer Task Force [...]

FW: Journal of Nursing Scholarship Genomic Special Issue

Whitehead, Shona R. (HSC) — Mon, 4 Feb 2013 09:46:56 -0600

Thanks for sharing Sharon!
From: Vaz, Sharon A.
Sent: Monday, February 04, 2013 9:45 AM
Subject: FW: Journal of Nursing Scholarship Genomic Special Issue

From: Nursing Genomic Competency Listserv [mailto:NURSING_GENOMIC_COMP@list.nih.gov] On Behalf Of Calzone, Kathleen (NIH/NCI) [E]
Sent: Friday, February 01, 2013 6:15 AM
To: NURSING_GENOMIC_COMP@list.nih.gov<mailto:NURSING_GENOMIC_COMP@list.nih.gov>
Subject: Journal of Nursing Scholarship Genomic Special Issue

Ensuring that nurses play a central role in the application of genomics to clinical care is at the core of the 2013 Genomics Special Issue of the Journal of Nursing Scholarship. The Issue explores genomic variation and its clinical implications for common diseases in pediatric and [...]

FW: Request for advocacy materials

Whitehead, Shona R. (HSC) — Thu, 31 Jan 2013 12:31:35 -0600

Please distribute to other Advocacy Organizations in your state.

From: James O'Leary [mailto:joleary@geneticalliance.org]
Sent: Thursday, January 31, 2013 9:00 AM
Subject: Request for advocacy materials

I am writing to ask for your help in providing information that will support individuals who wish to act as advocates on behalf of themselves, their families, or others living with the same condition. [...]

FW: 19th Annual Metabolic Camp at Emory University

Whitehead, Shona R. (HSC) — Tue, 29 Jan 2013 14:09:17 -0600

From: Blair, Rosalynn [mailto:rborlaz@emory.edu]
Sent: Tuesday, January 29, 2013 2:05 PM
Subject: 19th Annual Metabolic Camp at Emory University

Dear Ms. Williamson and Ms. Whitehead:

Registration has begun for the Annual Metabolic Camp at Emory University, offered by Southeast NBS & Genetics Collaborative (SERC) on June 24-29, 2013 for young women with PKU and MSUD. Attached is the camp brochure, containing program details and registration form. Our main goal with the camp is to house learning, education, and research in a fun-filled caring environment where women can gather to share their respective experiences and have a great time bonding and [...]

FW: What about Privacy and Progress in Whole Genome Sequencing?

Whitehead, Shona R. (HSC) — Tue, 29 Jan 2013 11:12:18 -0600

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, January 29, 2013 10:00 AM
Subject: What about Privacy and Progress in Whole Genome Sequencing?

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/688879/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=RMe6VXCA0QeG6KnjzlXuupgM8%2BD2I3cqhlv63PnSHac%3D%0A&s=b7de4945836ff230b9a5b8fa9a48cbc54163f650a5118769f5383860db898fee>

January 29, 2013

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/29jan13_myn.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/688879/255135/1634/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=RMe6VXCA0QeG6KnjzlXuupgM8%2BD2I3cqhlv63PnSHac%3D%0A&s=19e8e84149f5fbe35b16ccaa7f993d65a83defd8fe592167de62d9b787c563b5>

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/29jan13_meded.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/688879/255135/2509/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=RMe6VXCA0QeG6KnjzlXuupgM8%2BD2I3cqhlv63PnSHac%3D%0A&s=6ec5d8dc3ff280aa47902bcd44ded65ad595958573ce3b79a63037fadb60ba69>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/29jan13_disease.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/688879/255135/2510/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=RMe6VXCA0QeG6KnjzlXuupgM8%2BD2I3cqhlv63PnSHac%3D%0A&s=8af29e5fa4c41d38b9a11eaec59c7ee12bc8c859663e1e614e259a3cd85ca536>

This is a weekly bulletin from Genetic Alliance<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/688879/255135/868/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=RMe6VXCA0QeG6KnjzlXuupgM8%2BD2I3cqhlv63PnSHac%3D%0A&s=4e6745d5fa50fd377879876a7552b7a3dd9bf2428bf2c23147bb81a96a6903f5>.

View other Genetic Alliance publications<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/688879/255135/879/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=RMe6VXCA0QeG6KnjzlXuupgM8%2BD2I3cqhlv63PnSHac%3D%0A&s=5c79ff3133a7298f992a4b2b24022d3c3213bea0059f85860ee5c956642196d3>

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FW: Webinar Series: What about Privacy and Progress in Whole Genome Sequencing?

Whitehead, Shona R. (HSC) — Thu, 24 Jan 2013 09:52:26 -0600

From: Sharon Terry [mailto:sterry@geneticalliance.org]
Sent: Wednesday, January 23, 2013 10:14 AM
Subject: Webinar Series: What about Privacy and Progress in Whole Genome Sequencing?

[http://upload.wikimedia.org/wikipedia/en/thumb/2/2f/GAcolor3002cm.jpg/200px-GAcolor3002cm.jpg]
What about Privacy and Progress
in Whole Genome Sequencing?

A Year-Long Webinar Series
Registration is free: http://www.geneticalliance.org/webinars<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/688426/428560/97/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=ujHPNWQlmENURpBDZuDevuojW3KZR2AvHiBoSWA07Og%3D%0A&s=960d2e4a3648ce69e45c47168f50d86ed8ba38124f5cf8c1f7613e37f9827b17>

The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing. In short, it concludes that “to realize the enormous promise that whole genome sequencing holds for advancing clinical care and the greater public good, individual interests in privacy must be respected and secured”. In their words: “As the [...]

FW: [aphl-newsteps] Survey

Whitehead, Shona R. (HSC) — Wed, 16 Jan 2013 09:11:51 -0600

From: bounce-1045764-8125672@lists.aphl.org<mailto:bounce-1045764-8125672@lists.aphl.org> [mailto:bounce-1045764-8125672@lists.aphl.org] On Behalf Of Jill Levy-Fisch
Sent: Tuesday, January 15, 2013 6:27 PM
To: aphl-NewSTEPs
Cc: Sarah Wilkerson
Subject: [aphl-newsteps] Survey

Dear Friends and Colleagues,

This winter, we are kicking off a research project to ensure that the information we share on our website and with the families we serve is accurate in terms of how each state's newborn screening program works. We would appreciate your feedback and information through the following brief survey. [...]

FW: NBSTRN Virtual Repository Demo

Whitehead, Shona R. (HSC) — Tue, 15 Jan 2013 12:50:21 -0600

From: bounce-1045727-8125672@lists.aphl.org<mailto:bounce-1045727-8125672@lists.aphl.org> [mailto:bounce-1045727-8125672@lists.aphl.org] On Behalf Of Amy Hoffman
Sent: Tuesday, January 15, 2013 12:31 PM
To: aphl-NewSTEPs
Subject: [aphl-newsteps] NBSTRN Virtual Repository Demo

Join our LIVE presentation of the Virtual Repository of Dried Blood Spots (VRDBS) on Thursday, January 17th, 2013 at 2:00pm Eastern. We will show you how easy it is to use this centralized, web-based tool and give you the opportunity to ask questions about the system. [...]

FW: Newborn Screening Webinar

Whitehead, Shona R. (HSC) — Tue, 15 Jan 2013 12:48:16 -0600

From: Carrie Ostrea [mailto:carrieo@rareproject.org]
Sent: Monday, January 14, 2013 2:41 PM
Subject: Newborn Screening Webinar

As you know, many more diseases can be detected at birth than are currently part of the newborn screening panels in each state.

Join our webinar<http://globalgenes.org/rare-webinar-series-newborn-screening/> for a vibrant discussion and to learn more about why the states have different screening panels, how a particular screen can become part of your state's NBS panel, how the federal SACHDNC panel influences state screening, and the importance of renewing the Newborn Screening Saves Lives Act of 2007. [...]

FW: NINR Summer Genetics Institute

Whitehead, Shona R. (HSC) — Tue, 15 Jan 2013 11:14:46 -0600

From: Vaz, Sharon A. [mailto:SharonAV@health.ok.gov]
Sent: Tuesday, January 15, 2013 11:11 AM
To: Whitehead, Shona R. (HSC)
Subject: FW: NINR Summer Genetics Institute

FYI

From: Nursing Genomic Competency Listserv [mailto:NURSING_GENOMIC_COMP@list.nih.gov] On Behalf Of Calzone, Kathleen (NIH/NCI) [E]
Sent: Tuesday, January 15, 2013 11:00 AM
To: NURSING_GENOMIC_COMP@list.nih.gov<mailto:NURSING_GENOMIC_COMP@list.nih.gov>
Subject: NINR Summer Genetics Institute

The National Institute of Nursing Research Summer Genetics Institute (SGI) training program application period is now open. For further information about SGI and the process for applications, please see:
http://www.ninr.nih.gov/Training/TrainingOpportunitiesIntramural/SummerGeneticsInstitute/ [...]

Re: SACHDNC Webinar, Jan 31-Feb 1, 2013: Registration and Agenda

Luedtke, Julie — Mon, 14 Jan 2013 19:07:39 +0000

Thanks everyone . Sounds like a lot of people have had trouble. The two solutions offered that apparently have worked for people, is to be sure you fill out every line, or to go directly to their web site for registration instead of using this link.

From: Communication for the Heartland Regional Genetics Group [mailto:HEARTLAND@SPEEDY.OUHSC.EDU] On Behalf Of Dean, Lori
Sent: Monday, January 14, 2013 11:52 AM
To: HEARTLAND@SPEEDY.OUHSC.EDU
Subject: Re: SACHDNC Webinar, Jan 31-Feb 1, 2013: Registration and Agenda [...]

Re: SACHDNC Webinar, Jan 31-Feb 1, 2013: Registration and Agenda

Dean, Lori — Mon, 14 Jan 2013 17:51:45 +0000

No restrictions as far as I know.

Lori Williamson Dean, MS, CGC, LGC
Department Chair and Assistant Professor, Department of Genetic Counseling
Program Manager, Heartland Genetics & NBS Collaborative
University of Arkansas for the Medical Sciences

Phone: 405-819-2135 or 501-526-7703

http://www.uams.edu/chrp/genetics
http://www.heartlandcollaborative.org<http://www.heartlandcollaborative.org/>

Confidentiality Notice: This e-mail message, including any attachments, is for the sole use of the intended recipient(s) and may contain confidential and privileged information. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail and destroy all copies of the original message. [...]

Re: SACHDNC Webinar, Jan 31-Feb 1, 2013: Registration and Agenda

Luedtke, Julie — Mon, 14 Jan 2013 16:17:56 +0000

Is there some restriction on registering? I have tried, and it keeps telling me my e-mail is not a valid e-mail address. When it asks for what type of registrant you are (e.g. SACHDNC member or HRSA staff), I select "Other" as it seems it is open.

From: Communication for the Heartland Regional Genetics Group [mailto:HEARTLAND@SPEEDY.OUHSC.EDU] On Behalf Of Whitehead, Shona R. (HSC)
Sent: Monday, January 07, 2013 3:15 PM
To: HEARTLAND@SPEEDY.OUHSC.EDU
Subject: FW: SACHDNC Webinar, Jan 31-Feb 1, 2013: Registration and Agenda [...]

FW: Genetic Allilance Weekly Bulletin: Top 10s for 2012

Whitehead, Shona R. (HSC) — Tue, 8 Jan 2013 11:00:53 -0600

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, January 08, 2013 10:00 AM
Subject: [weekly_bulletin] Top 10s for 2012

View web version<http://listserv.galists.org/t/687599/255135/607/0/>

January 8, 2013

[http://www.geneticalliance.org/sites/default/files/ksc_assets/images/weekly_bulletin_banner.png]<http://listserv.galists.org/t/687599/255135/873/0/>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/08jan13_top10.jpg]<http://listserv.galists.org/t/687599/255135/2477/0/>

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/08jan13_internship.jpg]<http://listserv.galists.org/t/687599/255135/2480/0/>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/08jan13_myn.jpg]<http://listserv.galists.org/t/687599/255135/2481/0/>

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/08jan13_ah.jpg]<http://listserv.galists.org/t/687599/255135/2483/0/>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/08jan13_ohsu.jpg]<http://listserv.galists.org/t/687599/255135/2485/0/>

This is a weekly bulletin from Genetic Alliance<http://listserv.galists.org/t/687599/255135/868/0/>.

View other Genetic Alliance publications<http://listserv.galists.org/t/687599/255135/879/0/>

If you received this from a friend and would like to subscribe, click here<http://listserv.galists.org/t/687599/255135/1867/0/>.

FW: SACHDNC Webinar, Jan 31-Feb 1, 2013: Registration and Agenda

Whitehead, Shona R. (HSC) — Mon, 7 Jan 2013 15:15:20 -0600

If you are interested in registering for the January SACHDNC webinar (which replaces the face-to-face meeting), please see the attached information.

Registration deadline is Thursday, January 17, 2013, 5:00 PM Eastern Standard Time.

Shona R. Whitehead
Asst. Project Manager
Heartland Genetics and Newborn Screening Collaborative
405-271-8001 ext. 42190

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Monday, January 07, 2013 3:10 PM
Subject: SACHDNC Webinar, Jan 31-Feb 1, 2013: Registration and Agenda
Importance: High [...]

FW: New Funding Opportunity - Long-term follow-up Grant

Whitehead, Shona R. (HSC) — Thu, 20 Dec 2012 14:49:26 -0600

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Thursday, December 20, 2012 1:55 PM
Subject: FW: New FOA - Long-term follow-up Grant
Importance: High

From: Copeland, Sara (HRSA)
Sent: Thursday, December 20, 2012 2:36 PM
Subject: New FOA

New Funding Opportunity Announcement:

HRSA is requesting applications for long-term follow-up grants-
The purpose of this funding opportunity is to demonstrate the feasibility and capability for data collection from the newborn screening identified patient population in primary care clinics to accomplish the long-term follow-up roles and responsibilities as outlined in the 2011 report, "What Questions Should Newborn Screening Long-term Follow-up Be Able to Answer? [...]

Happy Holidays!

Whitehead, Shona R. (HSC) — Thu, 20 Dec 2012 12:53:27 -0600

[cid:image003.jpg@01CDDEB1.016FBC50]

Best wishes for 2013!

Brad Schaefer, MD
Project Co-Director
Heartland Genetics & Newborn Screening Collaborative
University of Arkansas for Medical Sciences

Klaas Wierenga, MD
Project Co-Director
Heartland Genetics & Newborn Screening Collaborative
University of Oklahoma Health Sciences Center

Lori Williamson Dean, MS, CGC, LGC
Project Manager
Heartland Genetics & Newborn Screening Collaborative
University of Arkansas for Medical Sciences

Shona Whitehead
Asst. Project Manager
Heartland Genetics & Newborn Screening Collaborative
University of Oklahoma Health Sciences Center [...]

FW: CMH Bioethics Debate Series - Nov. Recordings and Registration for Medical Futility Feb. 2013

Whitehead, Shona R. (HSC) — Thu, 13 Dec 2012 15:04:16 -0600

Collaborative members asked about the archive of the bolded webinar held 11/27/12. Click link to access recording. Slide set is attached.
From: Watkins, Vanessa, S [mailto:vswatkins@cmh.edu]
Sent: Thursday, December 13, 2012 2:46 PM
Subject: FW: CMH Bioethics Debate Series - Nov. Recordings and Registration for Medical Futility Feb. 2013

Vanessa S. Watkins, MPH, FACHE
Certificate Program Coordinator | Children's Mercy Bioethics Center
2401 Gillham Road | Kansas City, MO 64108
816-701-5285 (phone) | 816-701-5286 (fax)
vswatkins@cmh.edu<mailto:vswatkins@cmh.edu> [...]

Re: WEBINAR: Individualized Healthcare Plans: What is YOUR State Doing?

Luedtke, Julie — Wed, 12 Dec 2012 17:22:38 +0000

Karen and Krystal and I have a conflict so won't be able to attend.

From: Communication for the Heartland Regional Genetics Group [mailto:HEARTLAND@SPEEDY.OUHSC.EDU] On Behalf Of Whitehead, Shona R. (HSC)
Sent: Wednesday, December 12, 2012 9:52 AM
To: HEARTLAND@SPEEDY.OUHSC.EDU
Subject: WEBINAR: Individualized Healthcare Plans: What is YOUR State Doing?

We hope you can join us next Wednesday for this exciting webinar! Please pass this information along to others in AR, IA, KS, MO, ND, NE, OK and SD who might be interested in participating. [...]

FW: Genetic Alliance Weekly Bulletin

Whitehead, Shona R. (HSC) — Wed, 12 Dec 2012 10:18:38 -0600

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, December 11, 2012 10:00 AM
Subject: Stem Cell Oversight - New IOM Report

View web version<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/607/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=62bd5b50049db0af27e0fc8ead7bfb3840ee3cf70486463d67c9a95cbd84481b>

December 11, 2012

[http://www.geneticalliance.org/sites/default/files/ksc_assets/images/weekly_bulletin_banner.png]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/873/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=8949de1455f3582a939da35b4b88b779fd7691306f85ea89c6f61e467ca60864>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/11dec12_urac.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/2448/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=fc516580674a853c81f2a9df54a7964c5c1ac6e1a2021a652fe201fc846d0e5f>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/11dec12_ehr.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/2449/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=f5f499ccd8d0045b79a4ea6c9e3d1f0950f3dcaa74c26b136f71731aab8a210b>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/11dec12_cirm.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/2450/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=ff361159bbe60c8806eeba6e0811ec84ba1cff41c2bf5e63b63ff94951201dfa>

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[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/11dec12_myn.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/2452/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=33d4e9a0119cf8928537438194753f0ce0fe914e4a42ba7b8f1f883807e00e5d>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/11dec12_pged.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/2453/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=7c4d90112468ed3ca9e7b6cebf7821132537135aba75182ffc0f7d9ea8716d1d>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/11dec12_amchp.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/2454/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=96e5bad5e6b90b2c3e1d9a2e0d71fb069907fc1e286daa09ba3f856ab33baf24>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/11dec12_ccph.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/2457/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=1ae921cd4d5f685d0576c81357190cdc88b5e4cea8cb64cd047870bf45634e21>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/11dec12_challenge.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/2456/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=b288034c94084350dabfbe8476d028d9edd19318071e67218517f598c07db2db>

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View other Genetic Alliance publications<https://urldefense.proofpoint.com/v1/url?u=http://listserv.galists.org/t/686286/255135/879/0/&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=N5XlZIm8YGnXqcQfdLnKGBVXGJY8NXjw9V%2F%2BZqtA%2BAs%3D%0A&s=11ec3fda09cb1ec64211d6e132cffc0aeb4bf22439566e533cbfb59bb291d874>

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WEBINAR: Individualized Healthcare Plans: What is YOUR State Doing?

Whitehead, Shona R. (HSC) — Wed, 12 Dec 2012 09:51:46 -0600

We hope you can join us next Wednesday for this exciting webinar! Please pass this information along to others in AR, IA, KS, MO, ND, NE, OK and SD who might be interested in participating.

[cid:image003.jpg@01CDD15D.42D6F5C0]

Individualized Healthcare Plans: What is YOUR State Doing?

Join us for a Webinar on December 19

[cid:image004.gif@01CDD15D.42D6F5C0]<https://urldefense.proofpoint.com/v1/url?u=https://www4.gotomeeting.com/register/966887799&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=kmPmUHvQvOkV%2FnJZildhjjmUGYES1QY1Jd2wl1qn44M%3D%0A&s=1343acc2388a86c3d1f803a888f41fdb784ba6709b5d6e239cf7e6d42383862f>

Space is limited.
Reserve your Webinar seat now at:
https://www4.gotomeeting.com/register/966887799<https://urldefense.proofpoint.com/v1/url?u=https://www4.gotomeeting.com/register/966887799&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=kmPmUHvQvOkV%2FnJZildhjjmUGYES1QY1Jd2wl1qn44M%3D%0A&s=1343acc2388a86c3d1f803a888f41fdb784ba6709b5d6e239cf7e6d42383862f> [...]

FW: Register Now: "Epigenetics -- What Your Patients are Asking, What You Need to Know"

Whitehead, Shona R. (HSC) — Fri, 7 Dec 2012 09:42:06 -0600

From: Lindsay Wilson [mailto:LWilson@aap.org]
Sent: Friday, December 07, 2012 9:31 AM
Subject: Register Now: "Epigenetics -- What Your Patients are Asking, What You Need to Know"

Hello Regional Collaboratives,

The final Time Out for Genetics webinar, "Epigenetics -- What Your Patients are Asking, What You Need to Know" will take place on Thursday, December 20 from 12-12:30pm Central. Visit this link to register: <https://www2.gotomeeting.com/register/634989450> https://www2.gotomeeting.com/register/329126586. Additional information is below. [...]

Heartland Webinar: Individualized Healthcare Plans: What is YOUR State Doing?

Whitehead, Shona R. (HSC) — Fri, 30 Nov 2012 14:45:47 -0600

Please feel free to share with anyone in the Heartland who might be interested in participating.

[http://www4.gotomeeting.com/g2w/images/966887799/352720764365706857/embed.jpg]

Individualized Healthcare Plans: What is YOUR State Doing?

Join us for a Webinar on December 19

[http://img.gotomeeting.com/g2mimages/webinar/themes/basic/button_registerNow.gif]<https://urldefense.proofpoint.com/v1/url?u=https://www4.gotomeeting.com/register/966887799&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=kmPmUHvQvOkV%2FnJZildhjjmUGYES1QY1Jd2wl1qn44M%3D%0A&s=1343acc2388a86c3d1f803a888f41fdb784ba6709b5d6e239cf7e6d42383862f>

Space is limited.
Reserve your Webinar seat now at:
https://www4.gotomeeting.com/register/966887799<https://urldefense.proofpoint.com/v1/url?u=https://www4.gotomeeting.com/register/966887799&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=kmPmUHvQvOkV%2FnJZildhjjmUGYES1QY1Jd2wl1qn44M%3D%0A&s=1343acc2388a86c3d1f803a888f41fdb784ba6709b5d6e239cf7e6d42383862f>

During this session, participants can take part in an interactive discussion regarding Individualized Healthcare Plans (IHP’s). Presenters will share a Kansas project related to IHP’s and plans for expansion within the eight states of the Heartland Genetics and Newborn Screening Collaborative. [...]

FW: ACMG Meeting-Call for Abstracts

Whitehead, Shona R. (HSC) — Fri, 30 Nov 2012 11:26:30 -0600

From: ACMG [mailto:acmg@acmg.net]
Sent: Friday, November 30, 2012 11:07 AM
Subject: ACMG Meeting-Call for Abstracts

If this email does not display properly, please view our online version<https://urldefense.proofpoint.com/v1/url?u=http://acmg.informz.net/z/cjUucD9taT0yODIwMTUxJnA9MSZ1PTEwMjAyMDQyMjgmbGk9MTQ0MzI0MDk/index.html&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=3p8v4UKgb%2BsD2qxcA7johpwAO7Pq6nyXgmnpDP7Ytiw%3D%0A&s=3b15c5f69307ae80215724266ab5ae82c75427a3d5306f413efad5367f9374ad>.
To ensure receipt of our email, please add acmg@acmg.net<mailto:acmg@acmg.net> to your address book.

[http://acmg.informz.net/acmg/data/images/2013.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://acmg.informz.net/z/cjUucD9taT0yODIwMTUxJnA9MSZ1PTEwMjAyMDQyMjgmbGk9MTQ0MzI0MTA/index.html&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=3p8v4UKgb%2BsD2qxcA7johpwAO7Pq6nyXgmnpDP7Ytiw%3D%0A&s=4f7a0291e95867bd66cbbb2c2b241de1b1659bfbfe1ef2fb423ce17e32ae54a2>

Important Deadlines

Abstract Submission
– December 7, 2012
EARLY BIRD Registration Deadline – December 19, 2012
Abstract Submissions Acceptance Communicated
– January 2013
ADVANCE Registration Deadline
– February 13, 2013
Hotel Reservation Deadline
– February 19, 2013 [...]

Free Webinar : The Value of Genetic Counselors: How to Collect Cost Effective Data and Improve Access to Care

Whitehead, Shona R. (HSC) — Tue, 27 Nov 2012 13:06:48 -0600

From: Dean, Lori [mailto:LWDean@uams.edu]
Sent: Tuesday, November 27, 2012 12:55 PM
To: Whitehead, Shona R. (HSC)
Subject: FW: Reminder! Free Webinar : The Value of Genetic Counselors: How to Collect Cost Effective Data and Improve Access to Care

Lori Williamson Dean, MS, CGC, LGC
Department Chair and Assistant Professor, Department of Genetic Counseling
Program Manager, Heartland Genetics & NBS Collaborative
University of Arkansas for the Medical Sciences [...]

FW: Register Now: "Genetics Across the Lifespan -- Putting It All Together"

Whitehead, Shona R. (HSC) — Tue, 27 Nov 2012 09:02:51 -0600

From: Lindsay Wilson [mailto:LWilson@aap.org]
Sent: Tuesday, November 27, 2012 7:19 AM
Subject: Register Now: "Genetics Across the Lifespan -- Putting It All Together"

Hello Regional Collaboratives,

The next Time Out for Genetics webinar, "Genetics Across the Lifespan -- Putting It All Together" will take place on Thursday, November 29 from 12-12:30pm Central. Visit this link to register: https://www2.gotomeeting.com/register/634989450. Additional information is below. [...]

Re: Happy Thanksgiving!

Haddad, Soheila — Tue, 20 Nov 2012 15:57:00 -0600

Thanks, and same to all of you.

Sue Haddad

From: Communication for the Heartland Regional Genetics Group
[mailto:HEARTLAND@speedy.ouhsc.edu] On Behalf Of Whitehead, Shona R.
(HSC)
Sent: Tuesday, November 20, 2012 12:49 PM
To: HEARTLAND@speedy.ouhsc.edu
Subject: Happy Thanksgiving!

The Heartland Regional Coordinating Center wishes you and your family a
Happy Thanksgiving!

Brad Schaefer, MD

Project Co-Director

Heartland Genetics & Newborn Screening Collaborative

University of Arkansas for Medical Sciences [...]

Happy Thanksgiving!

Whitehead, Shona R. (HSC) — Tue, 20 Nov 2012 12:49:10 -0600

The Heartland Regional Coordinating Center wishes you and your family a Happy Thanksgiving!

[cid:image003.jpg@01CDC71D.6FD213B0]

Brad Schaefer, MD
Project Co-Director
Heartland Genetics & Newborn Screening Collaborative
University of Arkansas for Medical Sciences

Klaas Wierenga, MD
Project Co-Director
Heartland Genetics & Newborn Screening Collaborative
University of Oklahoma Health Sciences Center

Lori Williamson Dean, MS, CGC, LGC
Project Manager
Heartland Genetics & Newborn Screening Collaborative
University of Arkansas for Medical Sciences [...]

FW: APHL Newborn Screening PSA in Times Square

Whitehead, Shona R. (HSC) — Fri, 9 Nov 2012 15:37:56 -0600

It started on Nov. 1 and should go through Christmas.

From: Shuger, Jill (HRSA) [mailto:JShuger@hrsa.gov]
Sent: Friday, November 09, 2012 2:35 PM
Subject: APHL Newborn Screening PSA in Times Square

The link below is a PSA that APHL developed for NBS awareness campaign, it is on the CBS jumbotron in Times Square. Please share! [...]

FW: Upcoming Video Debate - Newborn Screening

Whitehead, Shona R. (HSC) — Thu, 8 Nov 2012 15:17:22 -0600

From: Watkins, Vanessa, S [mailto:vswatkins@cmh.edu]
Sent: Thursday, November 08, 2012 3:09 PM
To: Whitehead, Shona R. (HSC)
Subject: Upcoming Video Debate - Newborn Screening

Hello Shona,

The Children's Mercy Hospital Bioethics Center is hosting two upcoming free webinars that may be of interest to your members. Dr. Bryce Heese of CMH indicated that you might be able to post this to your Heartland Genetics Collaborative members. We would be grateful if you could share information on the newborn screening webinar and the second webinar (Slow Codes/DNR) as appropriate with your group. [...]

FW: Genetic Alliance Weekly Bulletin

Whitehead, Shona R. (HSC) — Wed, 7 Nov 2012 11:48:22 -0600

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, November 06, 2012 10:00 AM
Subject: Genetic Alliance Weekly Bulletin

View web version<http://listserv.galists.org/t/684483/255135/607/0/>

November 6, 2012

[http://www.geneticalliance.org/sites/default/files/ksc_assets/images/weekly_bulletin_banner.png]<http://listserv.galists.org/t/684483/255135/873/0/>

[http://www.geneticalliance.org/sites/default/files/ksc_assets/others/bulletin/06nov12_vote.jpg]<http://listserv.galists.org/t/684483/255135/2409/0/>

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This is a weekly bulletin from Genetic Alliance<http://listserv.galists.org/t/684483/255135/868/0/>.

View other Genetic Alliance publications<http://listserv.galists.org/t/684483/255135/879/0/>

If you received this from a friend and would like to subscribe, click here<http://listserv.galists.org/t/684483/255135/1867/0/>.

FW: Register Now: "Top 10 Genetics Resources for Pediatric Primary Care Providers"

Whitehead, Shona R. (HSC) — Thu, 18 Oct 2012 13:07:32 -0500

From: Lindsay Wilson [mailto:LWilson@aap.org]
Sent: Thursday, October 18, 2012 1:04 PM
Cc: Mikat-Stevens, Natalie
Subject: Register Now: "Top 10 Genetics Resources for Pediatric Primary Care Providers"

Hello Regional Collaboratives,

Just a reminder that the next Time Out for Genetics webinar, "Top 10 Genetics Resources for Pediatric Primary Care Providers" will take place on Thursday, October 25 from 12-12:30pm Central. Visit this link to register: https://www2.gotomeeting.com/register/702173234. Additional information is below. [...]

FW: Genetic Allilance Weekly Bulletin

Whitehead, Shona R. (HSC) — Thu, 18 Oct 2012 10:54:34 -0500

From: Genetic Alliance [mailto:bulletin@geneticalliance.org]
Sent: Tuesday, October 16, 2012 10:00 AM
Subject: Expand the Rights of Individuals to Access Their Test Results

View web version<http://listserv.galists.org/t/683269/255135/607/0/>

October 16, 2012

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This is a weekly bulletin from Genetic Alliance<http://listserv.galists.org/t/683269/255135/868/0/>.

View other Genetic Alliance publications<http://listserv.galists.org/t/683269/255135/879/0/>

If you received this from a friend and would like to subscribe, click here<http://listserv.galists.org/t/683269/255135/1867/0/>.

Re: 2012 Conference Presentations Available Online!

Luedtke, Julie — Thu, 18 Oct 2012 10:08:24 -0500

Thank you so much Holly for making this available to us!
Julie

From: Communication for the Heartland Regional Genetics Group [mailto:HEARTLAND@SPEEDY.OUHSC.EDU] On Behalf Of Whitehead, Shona R. (HSC)
Sent: Thursday, October 18, 2012 9:40 AM
To: HEARTLAND@SPEEDY.OUHSC.EDU
Subject: FW: 2012 Conference Presentations Available Online!

From: Johnson, Holly A [mailto:HAJohnson2@uams.edu]<mailto:[mailto:HAJohnson2@uams.edu]>
Sent: Thursday, October 18, 2012 8:55 AM
To: Whitehead, Shona R. (HSC)
Subject: FW: 2012 Conference Presentations Available Online! [...]