Dear Heartland colleagues:


This is YOUR OPPORTUNITY to hear, first-hand, the discussions held at the Secretary’s Advisory Committee.  This is the committee set up to advise the Secretary and Congress on matters that may relate to the Heritable Disorders Act (e.g., the Act that funds the regional collaborative infrastructure).  To date, this meeting has been held in DC and I (or a designee) usually go (or, rather started going after HRSA required it).  (Julie Miller and Amy Brower from our region also attend, but as members of the committee or subcommittees).   But, due to budget constraints, they are planning an audio meeting in August.  It’s open to the public, although, if you wish to provide comment, follow the instructions below.  There are rules. 


Also, if you want more background on the committee or to see the proceedings of past meetings, please go to their website: .


I really encourage you take advantage of this opportunity. 



From: Shuger, Jill (HRSA) [mailto:[log in to unmask]]
Sent: Thursday, July 24, 2008 12:51 PM
To: Amy Schwartz; Anne Comeau; Camille Miller; Celia Kaye; Cynthia Cameron; David Ledbetter; Gloria Weissman; Hans Anderssen; Janice Bach; John Moeschler; Mulvihill, John J. (HSC); Joyce Hooker; Judith Benkendorf; Katharine Harris; Kenneth Pass; Kerry Silvey; Kyler, Penny (HRSA); Williamson, Lori L. (HSC); Louis Bartoshesky; Mann, Marie (HRSA); Marzia Pasquali; Michael Watson; Piero Rinaldo; Puryear, Michele (HRSA); Rani Singh; Roger Eaton; Shuger, Jill (HRSA); Susan Berry; Susan Waisbren; Sylvia Au
Subject: Advisory Committee Mtg, Aug 7, 1-5 pm, Instructions for Call-in, Registration, and Public Comment


Fourteenth Meeting of the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)


August 7, 2008, 1:00 p.m. – 5:00 p.m. (EDT)


The meeting will include discussion on the ACHDNC’s evidence review process and to hear discussion from the ACHDNC members on condition nomination packages submitted for review by the ACHDNC for inclusion on the uniform newborn screening panel. 


You can locate the Agenda, presentations and meeting materials at the home page of the meeting website at

You may also access the Agenda at the Committee website:


Participation Instructions:

You can join the meeting by using the conference call dial in instructions.  

The call-in toll free number is 1 (877) 705-6006.  When prompted, say the password, Advisory Committee Meeting


Participants should call no later than 12:45 p.m. EDT in order for the logistics to be established for participation in the call.  General public participants also are asked to register for the conference by going to the registration website at  The registration deadline is Wednesday, August 6, 2008.  If there are technical problems gaining access to the call, please contact Jennifer McIntosh, Director, Conference and Meetings Management, Altarum Institute; telephone (202) 828-5100. 

Public Comments:

ACHDNC welcomes public perspectives on any of the issues to be covered during the meeting as well as issues important to members of the public.  Members of the public can present oral comments during the public comment period of the conference call.  Those individuals are required to register online by Thursday, July 31, 2008 at  Groups having similar interests are requested to combine their comments and present them through a single representative. 


Requests should contain the name, address, telephone number, and any professional or business affiliation of the person desiring to make an oral presentation.  The written comments will be distributed to Committee members prior to the conference call.  Parties wishing to submit written comments must ensure that the comments are postmarked or emailed no later than Thursday, July 31, 2008, for consideration.  Submit the written comments to: Tamar R. Shealy, Meetings Manager, Conference and Meetings Management, Altarum Institute, 1200 18th Street, N.W., Suite 700, Washington, DC 20036; telephone (202) 828-5100, fax (202) 785-3083, or e-mail [log in to unmask].  Each public commentator will be notified by email of their assigned presentation time.  The allocation of time may be adjusted to accommodate the level of expressed interest.



Jill F. Shuger, M.S.

Genetic Services Branch

HRSA/Maternal and Child Health Bureau

5600 Fishers Lane, Room 18A-19

Rockville, MD  20857

Ph: 301.443.3247

Fx: 301.443.8604

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