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- Paying With Our Lives:...
Paying With Our Lives: Advocacy Campaign to Save Rare Cancer Research
Massive federal budget cuts are stopping lifesaving research in its tracks — halting breakthroughs in rare cancer treatments and stealing time and hope from thousands of Americans. Decades of progress are at risk. And people with rare cancers are paying with their lives.
The Paying With Our Lives: Save Rare Cancer Research campaign is raising the alarm about the devastating human toll of these cuts and calling on policymakers to restore critical federal funding.
Your voice matters! Learn how you can take action.
Advocacy Campaign Toolkit
50 Stories From 50 States
Your voice can make a difference. We’re collecting stories from rare cancer patients and families nationwide to reveal the human and economic impact of federal funding cuts. Learn how to share a photo, statement, or short video — and join the movement to restore funding for rare cancer research.
Top 3 Ways to Make an Impact
Contact your local legislators
Besides their DC offices, members of Congress also have at least one office in their district. There, they meet face-to-face with constituents. Write a letter or request a meeting — and bring some friends along. Ask for protections for rare cancer research funding in the FY2026 budget* and share your experience to show why it matters. (AACR and 5calls.org are helpful resources for this type of outreach.)
*The Administration’s FY2026 discretionary budget request was released in May and proposes cutting the NIH budget by roughly 40%. This includes a more than 35% reduction in funding for the National Cancer Institute. Congress has the power to approve, modify, or reject this request. Your voice matters and can help your congressperson understand the impact of these cuts so they can fight to save rare cancer funding in the FY2026 budget.
Reach out to local news outlets
Submit an opinion editorial or a letter to the editor to your local paper. Call into a local talk radio show that invites public commentary. Share your story with a local or national podcaster. (RadioLocator and PodChaser are good resources to find relevant stations and pods.)
Share on social media
Share and amplify personal stories and policymaker asks through your social media channels. Add your own perspectives and experiences, and invite others to do the same.
Other Ways to Make an Impact
- Start a conversation in your community
- Join local demonstrations or protests, like those organized by standupforscience.net
- Partner with patient and research nonprofits
Rare Cancer Research In the News
- Trump Is Shutting Down the War On Cancer | The New York Times
- America First? Not When It Comes to Your Health | The New York Times
- “When Is Cancer Political?” Medial Researchers, Patients Decry Trump Admin’s Layoffs, Budget Cuts | CBS News
- U.S. Scientists Are Seeing Their Research Upended | The Washington Post
- Pediatric Brain Cancer Group to Lose Federal Funding | The New York Times
- Funding Disruptions in Cancer Research Affect Patients’ Lives, Scientists Say | The Scientist
- Woman’s Life-saving Treatment Delayed by Trump Cuts to NIH: ‘Cancer Shouldn’t Be Political’ | The Guardian
Advocates to Save Rare Cancer Research
Thank you to the following individuals and organizations for collaborating on the Paying With Our Lives: Save Rare Cancer Research campaign.
Advocacy Campaign Advisory Committee
Dana Deighton
Stage 4 Esophageal Cancer Survivor
Patient Advocate
Katie Doble
Stage 4 Rare Cancer Survivor
Patient Advocate
Advocacy Campaign Partners
If your organization is interested in partnering on this campaign, please contact [email protected].
