During the May 13th and May 14th quarterly 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 May 13th, Dylan Simon, Newborn Screening and Diagnostics Policy Manager, provided oral testimony updating the Advisory Committee on the federal and state policy efforts of the EveryLife Foundation. At the federal level, the Foundation continues to lead rare disease community coalition efforts with its Community Congress Newborn Screening and Diagnostics Working Group to support the passage of the Newborn Screening Saves Lives Reauthorization Act. The House and Senate both introduced legislation earlier this year containing the same language and we will continue to work with the rare disease community to ensure that policy makers understand the importance of this reauthorization.
On May 14th, Elisa Seeger, a Newborn Screening and Diagnostics Community Congress Working Group Co-Chair, presented oral testimony highlighting that the review and implementation of an updated evidence review process continues to be conducted in a manner that is transparent and inclusive of patient community members as key experts. She highlighted the importance that any new function of the Advisory Committee occurs in such a way without sacrificing the pace or quality of review of nominated conditions. In addition, she urged the Advisory Committee to continue to request feedback about the educational materials that will accompany the update to the review process. She encouraged the Advisory Committee to establish a multi-stakeholder working group – to include representatives from the patient community – to inform the development and dissemination of education materials.
Learn more about the Foundation’s newborn screening initiative and how to get involved at RareScreening.org.
