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Five-Minute Advocacy Update

Updated: Sep 7, 2021

Want to advocate on behalf of yourself or a loved one with CMD? Right now, several proposed U.S. bills exist that would benefit the CMD community as well as the larger rare disease community.

To support these bills, all it takes is to click one, some, or all of the links below, and fill out quick forms that automatically send letters to your legislators. You can also contact your members of Congress directly and ask them to co-sponsor and/or support these bills.

All the bills below align with Cure CMD’s three advocacy priorities to support our community:

  • Increased awareness of CMD and the needs of the CMD community

  • Access to affordable healthcare, employment, education, and travel

  • Funding for and support of research that will lead to treatments and cures for CMD

If you are able, please take 10 minutes to learn more below and support the following legislation. Your voice matters!

The STAT Act is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community. One pager

Newborn screening detects rare genetic conditions at birth. It enables efficient diagnosis and access to treatments that can save lives. One pager

This legislation will amend the Food, Drug and Cosmetic Act (FDCA) to ensure that patient experience, patient-focused drug development (PFDD), and related data—including information developed by a product sponsor or a third party such as a patient advocacy organization or academic institution—be considered as part of the risk-benefit assessment of treatments.

This bill will provide Medicare beneficiaries direct access to genetic counselors through direct access and billing.

The MNEA will require health coverage of qualified, necessary medical foods.

The Long-term Opportunities for Advancing New Studies (LOANS) for Biomedical Research Act – HR 3437 – will help advance much-needed treatments and cures for a broad range of diseases and conditions into clinical trials without significantly impacting the taxpayer burden.

This bill will increase access to genetic diagnostics as part of a broader proposal to improve access to innovative treatments and diagnostics. The bill’s diagnostics policy provisions would provide federal support for the use of genetic and genomic testing for pediatric patients with rare diseases.

The Ending the Diagnostic Odyssey Act will allow states to conduct pilot programs via an increase in the Medicaid Federal Medical Assistance Percentage rate (FMAP) to provide whole genome sequencing clinical services for children on Medicaid with a disease that is suspected to have a genetic cause.

This legislation strengthens enforcement of nondiscrimination protections and includes a private right of action for travelers with disabilities, ensures that aircraft are designed to accommodate passengers with disabilities, and improves access to seating accommodations. One pager

Want to subscribe to the Advocacy Team monthly newsletter? Is there legislation you would like Cure CMD to support? Complete the contact form on the bottom of our Advocacy page to get in touch!


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