The Rare Disease Advisory Council (RDAC) is an official, state-level advisory body in the United States that gives individuals living with rare diseases a direct voice in state government. Raising their voices for the patients, they provide policy advice and make formal recommendations to the lawmakers on key health issues.

While 30+ states have an established, ongoing RDAC, states like Washington, Idaho, and Oregon don’t. We hope to initiate a movement that gives a voice to Washington’s rare disease community.

Through patient advocacy, youth engagement, and public education, we are bringing rare diseases out of the shadows. By pushing for a state advisory council, we aim to accelerate access to precision therapies, reduce diagnostic delays, and ensure our lawmakers hear the lived experiences of patients and families every single day.