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2023 Rare Disease Week

For the first time since 2020, 2023 Rare Disease Week on Capitol Hill will happen in person, in Washington D.C., from February 28 to March 2.

Hosted by Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, this multi-day event brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. No matter one’s connection to rare disease or their advocacy experience level, all are welcome.

If you are interested in representing the CMD community at 2023 Rare Disease Week, please complete this interest form and we will be in touch with more on registration, travel planning, and the opportunity to apply for a travel stipend from Cure CMD.

Have additional questions? Contact Lani Knutson, Cure CMD Advocacy Team Lead.

"Anyone can become a Rare Disease Legislative Advocate — sharing your or your child's story and a desire to drive policies that positively impact congenital muscular dystrophy are the only qualifications needed to be an instrument to change." — Rachel Alvarez, Cure CMD Executive Director


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