The EveryLife Foundation for Rare Diseases is a nonprofit organization committed to advocating for the rare disease community. Their focus is on promoting impactful, science-driven legislation and policy that advance the equitable development of and access to lifesaving diagnoses, treatments, and cures. The foundation works to empower patients and their families, ensuring their voices are heard in the policymaking process. They strive to address the unique challenges faced by those with rare diseases, aiming to improve healthcare access and support research efforts for these often overlooked conditions.

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Research & Family Meetup

Denver, Colorado, December 4th, 2026. This December, MED13L families will gather in person at the Grand Hyatt Denver. The day brings our community together around the latest MED13L research and the chance to spend real time with one another. Early bird pricing available!