Stories That Move Policy

This section will feature rare disease advocates who have turned their challenges into change—educating lawmakers, mobilizing communities, and pushing for a better future. Whether you’ve spoken at a legislative briefing, joined a Hill Day, or written to your representative, your experience matters.

We're especially seeking voices from:

Black, Brown, and Indigenous communities

LGBTQ+ rare disease advocates

Young adults transitioning from pediatric to adult care

Caregivers and allies with powerful perspectives

Coming Soon

Check back soon to meet the changemakers driving rare disease policy forward.

 

Want to be featured?

Contact us with your story, photo, and advocacy impact.