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:
http://www.hrsa.gov/heritabledisorderscommittee/meetings/2004june/Fisch.
htm .

 

I really encourage you take advantage of this opportunity.  

 

Lori

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)

AUDIO CONFERENCE CALL

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

Agenda:

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 http://events.SignUp4.com/ACHDNC08.

You may also access the Agenda at the Committee website:
http://www.hrsa.gov/heritabledisorderscommittee. 

 

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 http://events.SignUp4.com/ACHDNC08.
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
http://events.SignUp4.com/ACHDNC08.  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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