Rare Cancer Research Foundation

05/28/2026

For decades, KRAS, the mutation driving more than 90% of pancreatic cancers, was considered undruggable. A Phase 3 trial of daraxonrasib just changed that, nearly doubling overall survival versus chemotherapy. Validating RAS as a therapeutic target opens the door to a next generation of even more selective inhibitors. This remarkable progress is the return on investment in basic science, exactly what RCRF is here to support. Shared data, biospecimens, and collaborative infrastructure make discoveries like this possible. Read more in this article from the New York Times (gift link).

The new strategy also holds promise for lung and colon tumors. Here’s how scientists discovered it.

05/27/2026

Rhabdomyosarcoma affects only 400-500 people per year, mostly teenagers. Chad Palumbo was one of them at 18. This week, he helped lead Princeton to an NCAA lacrosse championship. His story is a powerful reminder of why rare cancer research matters, and what can be possible.

05/22/2026

Heading to ASCO Annual Meeting next week? We’d love to connect with you there.

Join us to learn more about RCRF’s work advancing research, supporting patients and families, and building partnerships that move the rare cancer community forward. Send us a message to connect!

05/07/2026

We’re proud to share research presented at the AACR Annual Meeting 2026 on a patient-driven, multi-omic longitudinal study in metastatic uveal melanoma.

Through the Rare Cancer Research Foundation’s PRISM program, this work highlights how n=1 research can uncover clinically relevant insights into disease progression.

Key findings include the emergence of an EZH2/HDAC4 mutant subclone and evidence of immune escape via reduced antibody and MHC-related gene expression.

This study reinforces the value of longitudinal, patient-centered data in advancing rare cancer research.

Learn more at rarecancer.org/publications

05/01/2026

We’re inviting members of the rare cancer community to share their stories and photos on our website and social platforms.

By contributing, you help create a more personal, connected community, while also advancing scientific research. Patient experiences play a critical role in shaping research priorities, improving understanding of rare cancers, and accelerating more personalized approaches to care.

Your story has the power to inform, connect, and drive progress.

Submit your story or photos here: https://rarecancer.org/story

04/24/2026

Rare cancers are not rare in impact.
Together, rare cancers account for 1 in 4 cancer diagnoses, yet they have historically been underrepresented in research and data.

The Rare Cancer Research Foundation is bringing together fragmented clinical and genomic data from patients with rare cancers, to make the “rare” visible at scale. With your help, our work accelerates research for better answers and better outcomes.

04/22/2026

Rare cancer patients shouldn’t have to feel rare when it comes to care, options, or hope.

Community hospitals and academic medical centers play a powerful role in changing that and can help accelerate discoveries that simply wouldn’t happen otherwise.

Every patient matters. Every sample matters.

Let’s work together to ensure that no rare cancer patient is left without a path forward. Contact us at info@rcrf.org to learn more.

04/17/2026

April is National Cancer Prevention and Early Detection Month. The Rare Cancer Research Foundation connects patients with opportunities to donate tumor tissue and clinical data for research, helping scientists uncover patterns and biomarkers that lead to earlier detection and improved prevention strategies. Because discoveries in rare cancers often reveal fundamental insights about cancer itself, this research can help advance progress across all cancer types. Investing in rare cancer research today helps build the knowledge needed to detect cancer sooner and improve outcomes for future patients. Learn more at rcrf.org

04/15/2026

We believe patients are the key to curing rare cancers.

04/10/2026

The Rare Cancer Research Foundation will be at the American Association for Cancer Research, April 19-22! If you are a researcher in need of fresh tissue, a clinician that wants to have an immediate impact on rare cancer research or a patient/advocate who desires to expedite research on your specific cancer, please stop by our booth in the Advocacy Pavilion. We’d love to chat with you!

04/03/2026

April is Head and Neck Cancer Awareness Month. Head and neck cancers can begin in the mouth, throat, voice box, sinuses, or salivary glands and may affect how a person speaks, swallows, breathes, or eats. All head and neck cancers are considered . Learn more and support rare cancer research at rcrf.org.