Your Voice Matters!
Our Legislative Advocacy Team strives to bring awareness about congenital muscle disorders to legislators, and advocate for our community's needs at the federal, state, and local levels of government.
Members of the team are empowered to tell their story at advocacy events and by communicating with representatives to enact legislative change.
We support legislation that provides access to affordable healthcare, employment, education, and travel to those affected by CMD.
Additionally, we champion the funding of research, especially at the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), that will lead to treatments for CMD and other rare disorders.
If you want the patient voice heard in research, you have to be willing to get involved. - Ellyn Kodroff
Advocacy Leader, Lani Knutson during 2023 Rare Disease Day on Capitol Hill
Advocacy Partners: The Cure CMD Advocacy Team works with the following Rare Disease organizations to support legislation that affects our community.
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Global Genes: Allies in Rare Disease
Federal Advocacy
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Find out who represents you in the U.S. Senate and House of Representatives
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Learn how to build a relationship with your Senators and Representative
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Learn about the federal Rare Disease Congressional Caucus and ask your Senators and Representative to join if they haven’t already
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Use RDLA’s Advocacy Tools to learn more about how to advocate
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Familiarize yourself with RDLA's legislative scorecard
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Participate in RDLA's monthly legislative webinars to learn about current and proposed legislation that supports the Rare Disease community
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Sign up for Rare Across America
State Advocacy
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Learn how to advocate in your state by checking out RDLA’s State Advocacy Hub
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Join the RareAction Network for your state
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Check the NORD state report card to see how well your state supports the Rare Disease community
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Learn about NORD’s Project RDAC (Rare Disease Advisory Council) and see if one has been established in your state
Other Opportunities