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MAKE YOUR VOICE HEARD

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

Happening February 24-26, 2026, this event offers advocates an opportunity to make their voices heard with legislators. To assist participants, the EveryLife Foundation offers a limited number of travel reimbursements for individuals and caregivers. We encourage you to apply even if you aren't sure about attending. You do not need to have travel plans in place to apply.

 

Learn more about Rare Disease Week and apply for a travel reimbursement 

The application closes on Friday, November 7. 

If you do not receive this travel reimbursement, Cure CMD will offer limited travel grants at a later date.

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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