Rare Disease Advocates Call on Congress to Support Research and Public Health Agencies

Rare Daily Staff

More than 10,000 rare disease advocates signed a petition urging Members of Congress to encourage the President and the Secretary of Health and Human Services to support steady and robust federal agency leadership, federal biomedical research funding, and public health agency support.

EveryLife Foundation for Rare Diseases, which led the effort, delivered to every member of Congress on February 28 in honor of Rare Disease Day. The organization said it is concerned about the devastating and lasting impact recent executive orders will have on programs that are vital to thousands of rare diseases, and the 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,” Annie Kennedy, chief policy, advocacy, and patient engagement officer at the EveryLife Foundation. “For children and adults with rare diseases, even a momentary pause in funding for these programs or agencies has devastating, life-altering consequences.”

Photo: Patient advocates gather outside the Capitol for Rare Disease Week.