Save the Date: March 2 – 4, 2027
Rare Disease Week Registration will open on January 6, 2027.
This free multi-day event, hosted by the RARE Advocates, a program of the RARE Foundation, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate directly for policy change with their Members of Congress.
#RareDC2027
Travel Reimbursement Applications for Rare Disease Week 2027 are now closed.
Participating in Rare Disease Week on Capitol Hill was an inspiring and empowering experience. Connecting with fellow advocates and others who understand what it’s like to live with a rare disease was incredibly meaningful. Meeting with Members of Congress reinforced how powerful our personal stories can be in driving awareness and policy change. I highly encourage anyone considering joining in the future to do so. Your voice matters, and together we can help shape a better future for the rare disease community.”
Carlos Guerrero
Rare Disease Advocate
Thank you to our 2026 RARE Disease Week Sponsors
Presidential
Leadership
Ranking
Champion
Co-Sponsor
Advocate
Grassroots
Questions?
If you have questions about RARE Disease Week, please email us at rarediseaseweek@rareadvocates.org.
