Every Voice Matters

Welcome! RARE Advocates supports the advocacy of all rare disease patients and organizations. Using your voice, sharing your rare disease story and joining others to amplify the message, brings the needs of the rare disease community to the attention of local, state, and federal government officials.

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Get Started

We know that advocacy can be intimidating. Everything you need to take the first step is in one place.
Find Tools & Resources

Whether you are a first-time or seasoned advocate, we provide you with the right tools to make the biggest impact.
Join Programs & Events

Find opportunities to tell your story and raise your voice, in a way that feels true to you and your advocacy journey.
Stay Connected

Don’t miss out on upcoming events, Action Alerts, and the latest rare disease community news.

Tools You Need

About RARE Foundation

The RARE Foundation is a nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy.
Share Your Story

Share your rare disease story and help make a difference. Stories inspire, educate, and help policymakers understand the needs of the rare disease community.
Find Your Legislators

Engaging with your legislators ensures that the needs and priorities of the rare disease community are heard and considered in the policymaking process. Start building relationships with your legislators today!
Youth Advocacy

You’re never too young to tell your story and raise your voice!
Trainings and Videos

All the resources and tools you need to begin your advocacy journey with the RARE Foundation.

Advocating in Your State

Many healthcare decisions that impact the rare disease community are made at the state level. Find out how you can get involved in your state to push for initiatives to improve access to treatments, coverage of care, and more.

Find Your State

Take Action

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Help Grow the Congressional Rare Disease Caucus

The Congressional Rare Disease Caucus is a forum for Members of Congress to voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community, and build support for legislation that will improve the lives of people with rare diseases.

Who’s on the Caucus?