For the 30 million Americans living with one or more rare diseases, steady federal support for robust biomedical research and stability at national public health agencies are essential to advancing lifesaving research and public health initiatives. The EveryLife Foundation for Rare Diseases is deeply concerned at the devastating and lasting impact recent executive orders will have on programs that are vital to thousands of rare diseases, and our community as a whole.
A strong commitment to our federal health agencies is a commitment to the millions of Americans and families affected by rare diseases who rely on federal leadership to drive progress. And a strong commitment to funding research spurs innovative collaborations, builds infrastructure to attract private investment, and helps ensure our nation remains a global leader in working to cure diseases that were once deemed too rare or complex to treat.
The EveryLife Foundation implores President Trump and Congress to reinforce the longstanding, bipartisan commitment to the vital role that our biomedical ecosystem and federal health agencies play in protecting and advancing the health outcomes of all Americans. For children and adults with rare diseases, even a momentary pause in funding for these programs or agencies has devastating, life-altering consequences. In our community, time is a commodity and resources are precious. Funding innovation does not just ensure progress, it provides hope.
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EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation works to improve the lives of the millions of Americans suffering from rare diseases by advocating for policies that foster innovation and remove barriers to life-saving treatments. To learn more, visit EveryLifeFoundation.org.
