http:https://www.congressweb.com/nord Mon, 08 Sep 2025 16:31:05 GMT http:https://www.congressweb.com/nord/267 <div> <div>The Senate Appropriations Committee is considering the Administration’s request to cut NIH funding by nearly 40 percent for its fiscal year 2026 budget which could harm critical, lifesaving work at the National Institutes of Health (NIH). Please ask your members of Congress to support the rare disease community by asking for robust funding for NIH!&nbsp;&nbsp;</div> <div>&nbsp;</div> <div>Take action today!&nbsp;</div> </div> Wed, 30 Jul 2025 04:00:00 GMT http:https://www.congressweb.com/nord/267 http:https://www.congressweb.com/nord/260 <div>Members of Congress have the opportunity to advance important legislation that supports rare disease innovation for children by the end of this year. Since 2012, the FDA has awarded companies that develop life-saving and novel therapies for children with rare diseases with priority review vouchers (PRVs) to help spur innovation in this critical area. The Give Kids a Chance Act (H.R. 1262/ S. 932) would reauthorize the Pediatric Rare Disease Priority Review Voucher program through 2029. However, legislation extending this program must pass to ensure this important tool is reauthorized to address the significant unmet treatment needs that exist in the pediatric rare disease population does not end.</div> Mon, 07 Apr 2025 04:00:00 GMT http:https://www.congressweb.com/nord/260 http:https://www.congressweb.com/nord/256 <div>AB 2613 (Zbur) was passed unanimously by both the Assembly and Senate, and signed into law by California Governor Newsom in September 2024, creating the Jacqueline Marie Zbur Rare Disease Advisory Council (RDAC). This Council will give California rare disease patients, families, caregivers, providers, and other stakeholders an opportunity to make formal recommendations to state decision-makers on how to improve public policy for our community. However, the RDAC must receive funding before it can become a reality! Californians, contact your Assemblymember on the Assembly Budget Committee today to share why funding the Jacqueline Marie Zbur Rare Disease Advisory Council is important and ask for their support!</div> Thu, 06 Mar 2025 05:00:00 GMT http:https://www.congressweb.com/nord/256 http:https://www.congressweb.com/nord/2 <div>Members of the Rare Action Network are part of 30+ million person community working towards improving the lives of patients with rare diseases. RAN members will positively improve the quality of life for rare disease patients and their families by ensuring rare diseases become a national priority through policy, education and awareness. <a href="https://rareaction.org/get-involved/join-rare-action/">JOIN TODAY</a>!</div> Wed, 30 Apr 2025 04:00:00 GMT http:https://www.congressweb.com/nord/2