Rare Cancer Research Foundation

Today is Rare Cancer Day. Nearly 1 in 4 people living with cancer are diagnosed with a rare form — and every one of them deserves the same investment in research and answers as more common cancers get.

That's what the Mark Laabs Legacy Match is here to change. Today, and through the end of September, every gift is tripled. Make your impact today at rarecancer.org/give

September is Ovarian Cancer Awareness Month.

Ovarian cancer is often diagnosed late, in part because symptoms are vague and easy to miss. Better research — including access to living tissue and clinical data for study — is one of the clearest paths toward earlier detection and better outcomes.

This month, we're recognizing everyone affected by ovarian cancer, and the work still ahead.

September 23 is Rare Cancer Day, and we're marking it with a challenge: every gift made this month will be tripled, thanks to the Mark Laabs Legacy Match.

Rare cancers are underfunded and understudied — but that's exactly why Rare Cancer Day matters. Your support fuels the research that patients with rare cancers are counting on, and right now, it goes three times as far.

3x your impact, all month long. Give now at rarecancer.org/give

September is Desmoid Tumor Awareness Month.

Desmoid tumors are rare, locally aggressive soft tissue tumors — serious, often painful, and still poorly understood. With around 1,500 people diagnosed each year in the U.S., research depends on patients willing to contribute tissue and data.

We're proud to support the community working to better understand this disease, alongside our partners at the Desmoid Tumor Research Foundation.

After being diagnosed with Ocular Melanoma in 2012, Mark founded RCRF to bring shared service and infrastructure innovations to the rare cancer research ecosystem. Early in life, Mark established guiding principles to live by, two of which were “make the greatest contribution you can over the course of your lifetime” and to “consider the impact of your decisions on the next seven generations.”

RCRF’s mission to provide infrastructure solutions for all rare cancers, not just the one he was diagnosed with, demonstrates how fully Mark integrated these principles into his values and life. Mark passed away in early 2024, having set a visionary course for RCRF and the rare cancer community, and having deeply inspired those around him and touched countless hearts and minds globally.

The Mark Laabs Legacy Match carries that course forward: every gift made during the match is tripled, extending the same approach Mark believed in to the rare cancer community. Donate now at rcrf.org/give

September is Childhood Cancer Awareness Month.

Pediatric cancers are, categorically, rare cancers — which means less research, fewer treatment options, and less data to work from. That's part of why tissue donation matters so much here: it gives researchers something to actually study.

This month, we're recognizing the kids and families living with this every day, and the researchers working to change what's possible for them.

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)⁠

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

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

A New Personalized Cancer Vaccine Could Keep Skin Cancer From Coming Back, Drugmakers Say The results, announced this week by Moderna and Merck, could pave the way for a new generation of treatments tailored to individual tumors

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.