The EveryLife Foundation for Rare Diseases was excited to work alongside strong newborn screening advocates to send a letter to Secretary Kennedy to preserve our nation’s federal newborn screening system, call for the immediate reinstatement of the work of this important federal advisory committee, and protect our nation’s approach to systematic evidence review within the national newborn screening infrastructure. The letter—signed by 272 organizations representing patient advocacy organizations, nonprofit organizations, biotech, and others—urged the Secretary to understand the importance of the federal newborn screening system in ensuring that thousands of newborns each year receive timely diagnoses that allow for life-saving treatment.
New Name, Same Commitment to Rare Diseases
The EveryLife Foundation for Rare Diseases has become The RARE Foundation! Read more about our new brand and how it unifies our advocacy work on behalf of the rare disease community.
