Rare Across America 2025 Recap
- Lani Knutson
- 9 minutes ago
- 2 min read
In August, seven CMD advocates from Wisconsin, Ohio, and New York participated in Rare Across America, hosted by the EveryLife Foundation for Rare Diseases. This event gives advocates an opportunity to meet with their Members of Congress or their staff, without having to travel to Washington, D.C. During virtual meetings or in-person meetings held locally, advocates shared their stories and discussed issues important to the rare disease community. Advocates prepared for these meetings through educational webinars, including one on how to share your story with legislators.
The focus of this year’s discussions included:
Reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) program: The Rare Pediatric Disease Priority Review Voucher (PRV) Program expired on December 20, 2024. To restore this critical incentive, the House and Senate introduced the Give Kids a Chance Act (H.R. 1262/S. 932), which reauthorizes the PRV Program for five years. This vital program, which has no cost to taxpayers, continues to drive innovation in treatment development of rare pediatric diseases. Take action here.
Medicaid coverage for kids seeking care outside their home state: Many kids with a rare disease must travel to another state to receive care, including many in the CMD community. The Accelerating Kids' Access to Care Act (AKACA) bill (H.R. 1509/S. 752) allows pediatric providers to enroll more efficiently in multiple state Medicaid programs for a five-year period. Simply put, the Accelerating Kids’ Access to Care Act will ensure better, faster healthcare for kids who need it most by reducing the burden on the doctors who treat them. Take action here.
Restored federal funding of medical research: Recent bills passed by Congress have cut funding throughout the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). These agencies conduct life-saving medical research for many rare diseases, including CMD, and provide a pathway for approval of treatments. These cuts are delaying vital research and threatening the progress made in the development of treatments. Take action here.
In the past, all three issues have received bipartisan support from Senators and
Representatives alike. Advocates participating in Rare Across America placed a spotlight on these important issues and asked Members of Congress to co-sponsor and support these bills.
CMD community members are invited to get involved in advocacy! Join us for our inaugural CMD Advocacy Event: Your Voice Matters! happening in October. This event is designed to develop advocates who have little to no experience in advocacy. Learn more and register for the event here. Learn more about our advocacy efforts or contact us with questions.
