Current Actions

Urge Congress - Protect Crucial Funding for NIH and FDA!

Mon, 10 Mar 2025 04:00:00 GMT

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..

We need your help funding the Rare Disease Advisory Council in California!

Thu, 06 Mar 2025 05:00:00 GMT

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!

Urge Congress to get lifesaving rare disease legislation over the finish line in 2025!

Thu, 06 Feb 2025 05:00:00 GMT

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.

Join the Rare Action Network

Wed, 30 Apr 2025 04:00:00 GMT

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. JOIN TODAY!