During the August 6th and August 12th federal Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) meeting, the EveryLife Foundation and the Community Congress Newborn Screening and Diagnostics Working Group each provided testimony during a public comment section.
On August 6th, Elisa Seeger, a Newborn Screening and Diagnostics Community Congress Working Group Co-Chair, presented oral testimony highlighting the review process for new RUSP nomination packages. She highlights that the periodic evaluation of the RUSP nomination process is necessary to ensure that standards are current and rigorous and appreciates that the Advisory Committee sought out input from the patient community multiple times during this review process and are continuing that practice today. In addition, recognizing the significant workload of the Advisory Committee, and the pipeline of conditions that may be nominated to the Committee in the near term, she urged them to consider recommendations for additional information on the Condition Nomination Form.
On August 12th, Liesl Broadbridge, the Policy Fellow for the EveryLife Foundation for Rare Diseases, provided oral testimony updating the Advisory Committee on the Foundation’s newborn screening policy work and its focus on efforts to align federal RUSP recommendations with state implementation and to support stakeholder’s preparation for RUSP nominations through capacity-building efforts.
Learn more about the Foundation’s newborn screening initiative and how to get involved at RareScreening.org.
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