Rare Cancer Research Foundation

ASCO 2026 was a success for RCRF, filled with onsite meetings with existing partners, exciting new collaboration opportunities, and invaluable learning on the latest advances in oncology.
We had the pleasure of connecting with people doing incredible work in the cancer space, including Denise Robinson of the EHE Foundation, Jane Wilkinson of CANCollaborate (and former RCRF Board Member), and Melody Burchett of A Cure In Sight, who partners with us on their biobanking project.
The rare cancer community is small but mighty, and the momentum we felt this week is exactly what drives our work forward.

Our Pattern.org President Barbara Van Hare is joining OsteoBites this Thursday, June 4th at 3:00pm ET to discuss how patients have the power to contribute their resources to impact research. Without these types of donations, research can’t progress. Register for free here: https://www.eventbrite.com/e/osteobites-welcomes-barbara-vanhare-tickets-1989104649552

Fresh tissue is currently en route to the RCRF Pattern Biobank from a patient at the University of North Carolina. Every sample that comes through our doors brings rare cancer research one step closer to answers. Thanks to patients who choose to give back, we are making advances in rare cancer research possible.

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).

How an ‘Impossible’ Idea Led to a Pancreatic Cancer Breakthrough The new strategy also holds promise for lung and colon tumors. Here’s how scientists discovered it.

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!

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

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

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.

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 [email protected] to learn more.