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Young Adult Resources 

- Avery Roberts & Kierra Sunris
Young Adult Community Members

Being young adults with a rare disease ourselves, we think about our future a lot.
We want to help the CMD community navigate and interpret these often tricky concepts with useful tips and tricks for transitioning into this new and sometimes intimidating chapter of our lives.

  • Advocacy Partners
    The Cure CMD Advocacy Team works with the following rare disease organizations in the United States to support legislation that affects our community. National Organization for Rare Disorders (NORD) EveryLife Foundation for Rare Diseases Rare Disease Legislative Advocates (RDLA) Global Genes: Allies in Rare Disease Muscular Dystrophy Association (MDA)
  • International Advocacy
    Participate in the advocacy efforts of Eurodis, an organization committed to rare disease advocacy in 74 European countries. Get involved with Rare Disease International, a global alliance of persons living with a rare disease. Learn about the NGO Committee for Rare Diseases and their advocacy work. Join the international community in raising awareness about rare diseases on Rare Disease Day
  • Federal Advocacy
    Find out who represents you in the U.S. Senate and House of Representatives Learn how to build a relationship with your Senators and Representative Learn about the federal Rare Disease Congressional Caucus and ask your Senators and Representative to join if they haven't already Use RDLA's Advocacy Tools to learn more about how to advocate Familiarize yourself with RDLA's legislative scorecard Participate in RDLA's monthly legislative webinars to learn about current and proposed legislation that supports the Rare Disease community Sign up for Rare Across America Attend Rare Disease Week on Capitol Hill
  • State Advocacy
    Learn how to advocate in your state by checking out RDLA's State Advocacy Hub Join the RareAction Network for your state Check the NORD state report card to see how well your state supports the Rare Disease Community Learn about NORD's Project RDAC (Rare Disease Advisory Council) and see if one has been established in your state.
  • Other Opportunities
    Join YARR (Young Adult Representatives of RDLA) if you are 18-29 years old Celebrate Rare Disease Day in February Attend the RARE Patient Advocacy Summit sponsored by Global Genes Travel to the National Institutes of Health (NIH) to attend Rare Disease Day at NIH Participate in NORD’s Patient and Family Forum
  • Resources
    Share the Cure CMD Advocacy Fact Sheet with your legislators Create a One Pager telling your CMD story and share with your legislators. See an example.
Have a great resource you'd like to share? Get in touch! 

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Thank you for sharing. A member of the Cure CMD Team will be in touch!

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