Registrations for Rare Disease Week on Capitol Hill opened on Wednesday, January 7th, 2026! Click here to register on the EveryLife Foundation’s page!
Last year, 7 of our phearless phriends representing 4 states attended Rare Disease Week at Capitol Hill. Nearly 1,000 rare disease advocates from all 50 states gathered for the legislative conference to connect and learn about rare disease legislation and how it impacts patients. The legislative asks included:
– Support Steady and Robust Leadership, Federal Biomedical Research Funding, and Public Health Agencies
– Support the Reauthorization of the Rare Pediatric Disease Priority Review Voucher Program
– Ask Members of Congress to Join the Rare Disease Congressional Caucus
– Include the Accelerating Kids’ Access to Care Act (AKACA)
Each phriend met with the Congressional representatives or legislative staff for their respective states. This was an excellent opportunity to bring awareness to new House Representatives and Senators about rare disease legislation and to share our stories. Despite a highly dynamic political environment, rare disease legislation continues to receive strong bipartisan support. An estimated 10% of the U.S. population has a rare disease, and only 5% of rare diseases have an approved FDA treatment. The Pheo Para Alliance is committed to advocating for accelerating the development of and access to rare disease therapies, and we would love to see you there this year!
We hosted an informational session on Wednesday, January 7th, to answer any questions about this amazing and important week! You can view the meeting minutes from our informational session through the following link: RDW Informational Session Meeting Minutes for Website 01-07-26.docx.
Please don’t hesitate to reach out to Cindy (cindy@pheopara.org) if you have any questions!