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