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FEBRUARY
24-26, 2026

Sign Up Now for Rare Disease Week in DC

Want to learn how to be a legislative advocate? Travel to our nation's capital? Meet with Members of Congress? Spend time with the rare disease community? Then, you should attend Rare Disease Week on Capitol Hill!

Once you have registered, please email advocacy@curecmd.org to let us know you plan to attend. Cure CMD is able to offer limited support to help with travel costs.

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

Get Involved: Resources & Opportunities

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