Rare Cancer Research Foundation

09/04/2026

When surgeries are appropriate, fresh desmoid tissue samples can be collected for research. Your desmoid tumor tissue sample could hold the key to unlocking new discoveries about what drives desmoid tumors.⁠

Pattern.org, an initiative of the Rare Cancer Research Foundation, empowers patients to direct their tumor samples to innovative research projects at no cost. The samples are sent to leading institutions and labs where researchers use them to develop models and other studies to provide an understanding of the genetic basis of rare cancers.

If you have an upcoming surgery, please remember Pattern.org. You can contribute to valuable desmoid tumor research by signing up prior to your procedure. Just go to pattern.org to learn more!
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🔗 Learn more on our website: dtrf.org/donate-tissue-for-research⁠ (link in bio)⁠

09/03/2026

This September, we're launching the Mark Laabs Legacy Match.

Mark started this organization because he understood how little research exists for rare cancers, and how much of a difference it could make if that changed. He built RCRF around the belief that collecting living tissue and clinical data could actually move that research forward.

This campaign is our way of continuing Mark's legacy. Every gift given this September will be tripled, in his memory.

It's a way to make what you give go further, and to keep his belief in this work moving forward.

Give now at rarecancer.org/donate

08/28/2026

Smithsonian Magazine recently reported on a personalized cancer vaccine, developed by Moderna and Merck, that helped prevent melanoma from returning in a late-stage clinical trial, a result researchers are calling a major step toward a new generation of individualized cancer treatments. While the trial only included melanoma patients, experts say the same treatment approach could potentially be applied more broadly, to other cancer types as well as rare conditions caused by genetic mutations. Personalized mRNA vaccines are already in development for several other cancer types, offering hope that this approach could one day extend to rare cancers as well.

Read the full article at

The results, announced this week by Moderna and Merck, could pave the way for a new generation of treatments tailored to individual tumors

08/25/2026

Barbara Van Hare attended The ROS1ders PRIME Summit last week, pictured here with Janet Freeman-Daily, Co-founder, President, Board Chair of The ROS1ders. Summits like this remind us how much stronger the rare cancer community is when advocates come together to push research forward.

08/13/2026

Appendix cancer is rare. It's often diagnosed incidentally, frequently misunderstood, and historically understudied. That lack of visibility can make an already difficult diagnosis feel even more isolating.

This month, we're honoring everyone affected by appendix cancer: patients, survivors, caregivers, and families. RCRF remains committed to advancing research for rare cancers like this one, so that patients and families have more answers and better support in the years ahead.

08/11/2026

A new resource for cancer research, and rare cancer patients helped build it.

A new paper in Nature highlights how patient-donated tissue (including samples donated through Pattern.org) became part of a major expansion of research models now available to scientists worldwide.

Read more at https://rarecancer.org/news-updates/a-new-resource

08/07/2026

RCRF has a new, free guide available on our website. Here's a quick look at the difference between fresh samples and the three types of preserved samples, and how each one helps researchers move science forward. See more at https://rarecancer.org/tissue-formats

08/06/2026

We are accepting applicants for a Biologistics Coordinator in Durham, NC. This position is well suited to an early-career professional interested in developing expertise in biospecimen logistics, biobanking, clinical research operations, and rare-cancer research. Learn more and apply before August 14 at rcrf.org/careers

08/05/2026

We are proud to be listed among the contributing authors and institutions in a new Nature publication, "A Compendium of Next-Generation Patient-Derived Models for Diverse Cancer," reporting results from the Human Cancer Models Initiative.

Our direct-to-patient consent platform contributed to expanding donor enrollment, supporting representation of under-represented populations across the country.

You can read the full article now at https://rdcu.be/fx3I3

08/01/2026

Lung cancer is common. Lung cancer subtypes aren't.

Lung cancer is the leading cause of cancer death worldwide, but roughly 20% of lung adenocarcinomas are driven by rare genetic alterations. Patients with these subtypes need research built around their specific tumor, not lung cancer in general.

This Lung Cancer Awareness Day, we're talking about why rare subtype research deserves the same urgency as any rare cancer. Tissue donation is how that research happens. Learn more at rarecancer.org