Action Alert: Meeting on Heritable Disorders in Newborns and Children

May 7, 2013

Action Alert:  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:

Agenda:  The meeting will include: (1) a final report on the Pompe Condition Nomination for possible inclusion on the RUSP, and (2) updates on priority projects from the Advisory Committee’s subcommittees on Laboratory Standards and Procedures, Follow-up and Treatment, and Education and Training.

The Committee is expected to vote on whether or not to recommend to the Secretary the addition of Pompe Disease to the Recommended Uniform Screening Panel (RUSP).

Certain proposed agenda items may be subject to change as necessary or appropriate.  The agenda, webinar information, Committee Roster, Charter, presentations, and meeting materials are located on the Advisory Committee’s website at

Public Comments:  Members of the public can submit written comments and/or register to present oral comments during the public comment period of the meeting.  All comments, whether oral or written, are part of the official Committee record and will be available for public inspection and copying.  Advanced registration is required to present oral comments or submit written comments.  Individuals who wish to make public comments are required to email Lisa Vasquez ([email protected]) by Tuesday, May 13, 2013.  The public comment period is scheduled for the morning of May 17, 2013.

Written comments should identify the individual’s name, address, email, telephone number, professional or business affiliation, type of expertise (i.e., parent, researcher, clinician, public health, etc.) and the topic/subject matter of comment.  To ensure that all individuals who have registered to make oral comments can be accommodated, the allocated time may be limited.  Individuals who are associated with groups or have similar interests may be requested to combine their comments and present them through a single representative.  No audiovisual presentations are permitted.

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