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.

Get started by telling us a little bit about yourself:

Sign up using the form below to receive more information about the Policy & Advocacy Taskforces and register for our first National Taskforce meeting!

Policy & Advocacy Taskforce Events

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Region A: Washington, Oregon, California, Idaho, Nevada, Utah, Arizona, Montana, Wyoming, Colorado, New Mexico, Alaska, Hawaii​

Region B: North Dakota, South Dakota, Nebraska, Kansas, Oklahoma, Texas, Minnesota, Iowa, Missouri, Arkansas, Louisiana, Wisconsin, Illinois​

Region C: Michigan, Indiana, Ohio, Kentucky, West Virginia, Tennessee, North Carolina, South Carolina, Mississippi, Alabama, Georgia, Florida​

Region D: Virginia, District of Columbia, Maryland, Delaware, New Jersey, Pennsylvania, New York, Connecticut, Rhode Island, Massachusetts, Vermont, New Hampshire, Maine​


Policy Taskforce Map

Federal Alerts
Ask your Elected Officials to Support Policies that Benefit the Rare Disease Community in the 118th Congress

Ask your Senators to Support the Safe Step Act (S. 652)

State Alerts
Ask your State Senator to Support an Indiana Rare Disease Advisory Council