Join the Policy and Advocacy Taskforce

Are you passionate about rare diseases and public policy? Are you interested in getting more involved in federal or state policy, or both? Our National and Regional Policy and Advocacy Taskforces provide forums for volunteers to be more deeply involved in grassroots advocacy efforts and to fight for legislative solutions. The Taskforces are open to all, including experienced advocates and new volunteers, and we will offer you all the training and tools you need to be successful!

Our National Policy & Advocacy Taskforce is focused primarily on federal policy. We host four National Taskforce meetings per year, each aimed at providing rare disease advocates with new skills to add to their advocacy toolkit. Our four Regional Policy & Advocacy Taskforces each focus on improving state-level policy for rare disease patients and families across the country. Taskforce members have the opportunity to collaborate with and learn from advocates in neighboring states during five Regional Taskforce meetings throughout the year.