Speak Out to Save Rare Cancer Research!
There’s no such thing as a “good” cancer diagnosis. Hearing the words “you have cancer” unleashes fear, uncertainty, and countless questions. But the path forward can vary drastically.
A diagnosis of a common cancer fortunately often comes with treatment protocols, FDA-approved therapies, and doctors who’ve treated the disease many times before. Rare cancers often come with none of that—no effective treatments, no clinical trials, no clear roadmap.
The result? Outcomes for rare and common cancers can be worlds apart. And the difference isn’t just biology—it’s research.
That’s why recent cuts to medical research—both within the National Institutes of Health and across academic institutions—aren’t just short-sighted; they’re dangerous. Progress against rare cancer depends on federal funding at every stage: from the earliest basic science in the lab, to life-saving clinical trials, to the unglamorous but essential overhead costs that keep this work going — like lab safety and maintenance. Without federal funding, all of that stops.
1 in 4 cancers is considered rare. Yet rare cancers receive only a fraction of federal cancer research dollars. And now, already-limited funding is being slashed.
At TargetCancer Foundation, we decided to act, convening a group of rare cancer patients, caregivers, and advocates to launch a national advocacy campaign:
Paying With Our Lives: #SaveRareCancerResearch
This campaign aims to:
- Spread clear, accurate information about the effect of research cuts on rare cancer patients and families.
- Collect and share 50 stories from 50 states—from patients, caregivers, researchers, and advocates across the country.
- Urge policymakers to restore and protect federal investment in rare cancer research.
TCF is enormously grateful to the Advocates to Save Rare Cancer Research advisory committee. Their partnership and leadership made this campaign possible. Michael Casaus and Naomi Natale of CureMEC: The Myoepithelial Carcinoma Project, Suzanne Vincze of the Max Vincze Foundation, and rare cancer survivors and advocates Dana Deighton and Katie Doble brought their lived experience and unwavering commitment to the launch of this critical effort.
Since TCF began our work more than 15 years ago, one truth has become clear: research saves lives. It delivers answers, opens doors to new treatments, and gives families the most precious gift of all — time. Every delay in funding puts those gains at risk.
If we want change, the rare cancer community must come together and raise our collective voice.
Share your experience. Demand action. Help save rare cancer research — before more lives are lost.
#PayingWithOurLives | #SaveRareCancerResearch