Current Actions http:https://www.congressweb.com/nord Sat, 26 Jul 2025 02:04:58 GMT Urge Congress - Protect Crucial Funding for NIH and FDA! http:https://www.congressweb.com/nord/257 <div>The Fiscal Year 2026 (FY26) appropriations process continues! Congress has important decisions to make in the upcoming months regarding the fiscal year 2026 funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Send a message to your Senators and Representative today urging them to make rare disease health a priority by supporting robust funding for the NIH and FDA. Many treatments for rare diseases have been developed from the work done by the NIH, and FDA plays a critical role in delivering on the promise of these new treatments. It is critically important to ensure this support continues in order to help current and future generations..</div> Mon, 10 Mar 2025 04:00:00 GMT http:https://www.congressweb.com/nord/257 We need your help funding the Rare Disease Advisory Council in California! 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 Urge Congress to get lifesaving rare disease legislation over the finish line in 2025! http:https://www.congressweb.com/nord/244 <div>As we begin this year’s legislative session, now is the time to make your voice heard on pressing issues impacting our rare disease community. We urgently need your help in advocating for several rare disease bills that aim to increase access to quality health care and treatment for those living with rare diseases.&nbsp;</div> Thu, 06 Feb 2025 05:00:00 GMT http:https://www.congressweb.com/nord/244 Join the Rare Action Network 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