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Cure CMD supports and advocates for legislation at all levels of government to empower those living with congenital muscular dystrophy.

We strive to:

  • Improve access and accommodations for all forms of travel, including air, train and public transit.

  • Increase access to PreK-12 and post-secondary education, including physical accessibility and access to educational supports.

  • Advance employment for those affected by CMD

    • Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) reform).

    • End subminimum wage practices.

    • Provide incentives for businesses to hire people with disabilities.

  • Ensure timely approval of and access to medical care and equipment by public and private insurance.

  • Reinforce CMD research through National Institute of Health (NIH) funding.

  • Support programs and incentives that encourage the development of treatments for CMD and other rare diseases.

Pending U.S. Legislation

  • 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 RARE Advocacy Exchange virtual events Travel to the National Institutes of Health (NIH) to attend Rare Disease Day at NIH Participate in NORD’s Patient and Family Forum
  • Other Resources
    Create a One Pager telling your CMD story and share with your legislators. Use this template to get started. Use this fact sheet about CMD when you advocate with legislators.

Get Involved: Resources & Opportunities

  • 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 RARE Advocacy Exchange virtual events Travel to the National Institutes of Health (NIH) to attend Rare Disease Day at NIH Participate in NORD’s Patient and Family Forum
  • Other Resources
    Create a One Pager telling your CMD story and share with your legislators. Use this template to get started. Use this fact sheet about CMD when you advocate with legislators.
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