Lady talking

News and Education

Advisory Committee on Heritable Disorders in Newborns and Children

May 11-2, 2015

Announcement: The next meeting of the Advisory Committee on Heritable Disorders in Newborns and Children will be held on Monday, May 11, 2015 from 10:00 am to 4:30 pm and Tuesday, May 12, 2015 from 10:00 am to 2:30 pm. The meeting will be held via webinar.

Registration: The meeting will be open to the public. All participants must register in advance at The registration deadline is Monday, April 27, 2015, 11:59 PM Eastern Time. For technical problems gaining access to the registration website, please email Paul Brown,

Agenda: Agenda items include: (1) overview of the Committee’s authorizing legislation, (2) nomination process for prospective new committee members, (3) discussion of the newborn screening informed consent amendment in the Newborn Screening Saves Lives Reauthorization Act of 2014, (4) update from the Pilot Study Workgroup, (5) presentation on the Assistant Secretary for Planning and Evaluation funded project on the Affordable Care Act’s coverage mandate for conditions on the RUSP and the overall costs of screening for state newborn screening programs, (6) presentation by the Newborn Screening Translational Research Network Long-term Follow-up Project, (7) update on the condition review of Adrenoleukodystrophy, and (8) discussion of projects for the Committee’s workgroups and subcommittees on Laboratory Standards and Procedures, Follow-up and Treatment, and Education and Training. Tentatively, the Committee is expected to receive comments from states and discuss potential implications of the new legislation, and perhaps to vote on providing such information and/or associated recommendations to the Secretary for consideration regarding the newborn screening informed consent amendment in the Newborn Screening Saves Lives Reauthorization Act of 2014. This tentative vote does not involve any proposed addition of a condition to theRUSP.

Agenda items may be subject to change as necessary or appropriate. The agenda, webinar information, and other meeting materials will be located on the Committee’s website:

Public Comments: Members of the public may present oral comments and/or submit written comments. Comments are part of the official Committee record. Public comment periods are scheduled for May 11 and 12, 2015. Advance registration is required. The registration deadline is Monday, April 27, 2015, 11:59 PM Eastern Time.

Written comments must be received by the deadline in order to be included in the meeting briefing book. 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 comments. 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. For questions on public comments, please contact Lisa Vasquez at

Contact Person: Debi Sarkar,