During the May 2022 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 provided testimony during the public comment section.
Dylan Simon, the Director of Public Policy for the EveryLife Foundation for Rare Diseases, provided oral testimony requesting the Committee increase transparency around the onboarding process of new members and pending nominations. He also requested the Committee focus on expanding their review capacity for new conditions and that conversations on challenges to the newborn screening system outside of the Recommended Uniform Screening Panel (RUSP) occur at appropriate times. Read the oral testimony.
Kim Stephens, Newborn Screening and Diagnostics Community Congress Working Group Co-Chair, presented oral testimony highlighting the importance of including a patient advocacy organization representative as a voting member on the Committee. Read the oral testimony.
Learn more about the Foundation’s newborn screening initiative and how to get involved at RareScreening.org.
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