Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC); Notice of Meeting

In accordance with section 10(a)(2) of the Federal Advisory Committee Act (Pub. L. 92-463), notice is hereby given of the following meeting:

Name: Advisory Committee on Heritable Disorders in Newborns and Children.

Date and Time: May 12, 2009, 1 p.m.-5 p.m. EST.

Place: Web cast.

The ACHDNC will meet on Tuesday, May 12, 2009 from 1 p.m. to 5 p.m. EST. The general public can join the meeting via Webcast by logging onto http://altarum.na3.acrobat.com/achdnc/ ; next select “enter as a guest,” type in your full name, and click “enter room.” Participants must also dial the toll free phone number for audio (listen only). The dial-in number is 1 (877) 551-8166; when prompted say the password “HRSA Genetics”. Participants should call no later than 12:50 p.m. EST in order for the logistics to be established for participation in the call. If there are technical problems gaining access to the call, please contact Alison Gary, Web Meetings Coordinator, Altarum Institute, telephone (202) 828-5100, or e-mail webmeeting@altarum.org.

Meeting Registration: General public participants are asked to register for the conference by going to the meeting Web site at http://events.SignUp4.com/achdnc0509 . The registration deadline is Monday, May 11, 2009.

Special Accommodations: Attendees requiring special needs such as large print materials or additional special needs may make comments when registering at the Online Web site. Or you may wish to contact Tamar R. Shealy, Senior Meetings Manager, Conference and Meetings Management, Conference, Web and Communication Services, Altarum Institute; telephone (202) 828-5100, or e-mail Tamar Shealy at conferences@altarum.org.

Agenda: The meeting will include (1) A presentation of the external review workgroup's preliminary report on the nomination of Krabbe disease to the uniform newborn screening panel, (2) a discussion of the Committee's draft issue brief for recommending policies to states for the use and storage of newborn screening Residual Blood Spots, and (3) a discussion of the impact of the present economy on State newborn screening program infrastructures. Agenda items are subject to change as priorities dictate. You can also locate the Agenda, presentations, and meeting materials at the home page of the meeting Web site at http://events.SignUp4.com/achdnc0509 .

Public Comments: Members of the public may present oral comments during the public comment session. Individuals must register at the meeting Web site at http://events.SignUp4.com/achdnc0509 by Monday, May 11, 2009 to receive via e-mail their assigned presentation time. Groups having similar interests are requested to combine their comments and present them through a single representative. The allocation of time may be adjusted to accommodate the level of expressed interest. Those presenting oral comments are requested to submit their comments in writing for distribution to Committee members by Monday, May 11, 2009. Comments should be submitted to Tamar R. Shealy, Senior Meetings Manager, Conference and Meetings Management, Conference, Web and Communication Services, Altarum Institute; telephone (202) 828-5100, fax (202) 785-3083, or e-mail Tamar Shealy at conferences@altarum.org.

For Further Information Contact: Anyone interested in obtaining other relevant information should contact Alaina M. Harris, Maternal and Child Health Bureau, Health Resources and Services Administration, Room 18A-19, Parklawn Building, 5600 Fishers Lane, Rockville, Maryland 20857, Telephone (301) 443-0721, aharris@hrsa.gov. More information on the Advisory Committee is available at http://www.hrsa.gov/heritabledisorderscommittee/ .

Supplementary Information: The ACHDNC was chartered originally under Section 1111 of the Public Health Service (PHS) Act, 42 U.S.C. 300b-10 in February 2003 to advise the Secretary of the U.S. Department of Health and Human Services and as amended in the Newborn Screening Saves Lives Act. The Committee is governed by the provisions of Public Law 92-463, as amended (5 U.S.C. App. 2), and 41 CFR part 102-3, which sets forth standards for the formation and use of advisory committees. The ACHDNC is directed to review and report regularly on newborn and childhood screening practices for heritable disorders and to recommend improvements in the national newborn and childhood heritable screening programs.