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Over 700
Rare Disease Advocates
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165
Patient Organizations
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357
Meetings with Members of Congress
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1
Amazing Week!
RARE Disease Week Event Recordings:
February 24: Share Your Story Half-Day (2:00pm – 5:00pm ET)
February 25: Legislative Conference (9:00am – 5:00pm ET)
February 26: Senate Committee on Aging Hearing (9:30am – 11:30am ET)
February 26: Rare Disease Congressional Caucus Briefing (12:30pm – 2:00pm ET)
Key Policy Priorities:
Delay is decline. Delay is an irreversible loss of brain cells. Patients have done their part. We show up to studies. We give our data. We accept risk. We build natural history datasets so that innovative trial designs can be possible. We are asking that the regulatory framework meet us with the same urgency and consistency.
Lauren
Huntington’s Disease patient advocate
North Carolina
2026 Photo Galleries
Read Patient Stories
We asked you to share your stories about living with a rare disease with the United States Senate Special Committee on Aging during their hearing, “From Regulatory to Roadblock: How FDA Bureaucracy Stifles Innovation,” and you responded!
View the 2026 Program Booklet
We are not asking for shortcuts. We are asking for consistency. For enforcement of existing law. For regulatory reliability. We are asking for our right to try. In the wealthiest, most innovative nation on earth, no child should lose their life because the system meant to protect them cannot keep its word. We are closer than ever to rewriting the future of this disease, and all rare diseases. Please don’t let my generation become the next group of MPS mothers who stand at gravesides instead of graduations.
Alley
MPS parent advocate
Nevada
Thank You to Our 2026 RARE Disease Week Sponsors
Presidential
Leadership
Ranking
Champion
Co-Sponsor
Advocate
Grassroots
Questions?
Please email rarediseaseweek@rareadvocates.org
