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Advocacy Team Preparing for RDW 2023

Updated: Apr 13, 2023

This week, members of the Cure CMD Advocacy Team will join hundreds of rare disease advocates in Washington D.C. for Rare Disease Week on Capitol Hill. Hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), this annual event educates participants on policy proposals impacting the rare disease community and provides opportunities to meet with their Members of Congress to advocate for these policies. You can learn more about the event and register for the virtual portions at

This year’s legislative asks focus on research funding and on elevating the patient voice in research.

Even if you can’t travel to D.C. or attend the virtual Rare Disease Week events, you are encouraged to share your story with your Members of Congress and include these asks in your communications. Reach out to anytime to learn more about our advocacy efforts and how you can get involved.

Your voice is important!


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