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Oct 6 – Oct 7, 2026
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Oct 8, 2026Online
How to Get Involved with RARE Foundation: Virtual Session
Ready to share your story and get involved in rare disease advocacy? Join a virtual How to Get Involved session for an overview of our programs, events, and advocacy opportunities.
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Oct 12 – Nov 13, 2026Hybrid
Team RARE 26.2
A virtual endurance challenge built around connection, inclusion, and shared purpose, bringing our community together in support of individuals and families impacted by rare diseases.
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Oct 14, 2026Online
Rare Disease Congressional Caucus Briefing
Data to Discovery: Modernizing Healthcare Data and Clinical Trials to Accelerate Rare Disease Diagnosis and Treatments Confirmed Speakers:
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Nov 1, 2026In Person
2026 TCS New York City Marathon
Join the RARE Foundation run team at the New York City Marathon.
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Dec 10, 2026Online
How to Get Involved with RARE Foundation: Virtual Session
Ready to share your story and get involved in rare disease advocacy? Join a virtual How to Get Involved session for an overview of our programs, events, and advocacy opportunities.
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Mar 2 – Mar 4, 2027Hybrid
RARE Disease Week
This free, multi-day event, hosted by the RARE Foundation, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress.
New Name, Same Commitment to Rare Diseases
The EveryLife Foundation for Rare Diseases has become The RARE Foundation! Read more about our new brand and how it unifies our advocacy work on behalf of the rare disease community.
