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CMD Advocacy Updates: Urge Your Senators to Reject H.R.1 Now

Updated: Jul 1


Cure CMD Advocacy Banner: Your Voice Matters

Latest Update: 07/01/2025

Protect Medicaid Graphic over an image of Capitol Hill

The Senate has just passed a version of the One Big Beautiful Bill Act (OBBBA) with even deeper Medicaid cuts, putting millions at risk of losing coverage. The House is next—contact your Representative today and urge them to reject this dangerous legislation before it’s too late.

Latest Updates from Everylife Foundation:

Only Have Five Minutes? Call or email your senator now!

The One Big Beautiful Bill Act (H.R.1) was passed by the House of Representatives on May 22 and is now awaiting further action in the Senate. The bill includes new work requirements mandating a minimum level of employment, hours worked, or volunteer activity in order to qualify for Medicaid health coverage. It is estimated that millions of people could lose health insurance as a result of these provisions, reducing the ability to receive medical treatment, at-home care assistance, medical equipment, and the medication they need to live their engaged lives.

Have a Few More Minutes to Spare?

Everylife Rare Disease Legislative Advocates Graphic

Take a look at the other action alerts on the EveryLife Foundation’s website. We encourage you to speak out to your Members of Congress about:


Upcoming Advocacy Opportunities

Everylife's Rare Across America promo: Aug 4-15th, 2025

Rare Across America: Through this program, you will have the opportunity to meet with your Members of Congress at their in-district offices or virtually and educate them on the issues that are most important to the rare disease community by sharing your story. Prep webinars occur in July, and Hill Meetings will be scheduled between August 4 and 15. Registration is open now through July 11.


2025 Scientific & Family Conference in Philadelphia will feature an Advocacy Seminar

Advocacy Session at SciFam: If you are attending SciFam this August, be sure to check out the Advocacy Session on Sunday, August 3. Members of the CMD Advocacy Team will share about their latest work, current hot topics, and how you can get involved.


Now More Than Ever

Federal funding cuts—especially to the National Institutes of Health (NIH) —along with harmful legislation like H.R.1 (OBBBA), put rare disease research and care at serious risk. Your donation today helps Cure CMD push back, powering global advocacy that defends our community and ensures CMD voices are heard where decisions are made.


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