Patient-Powered Research and Community

Since 2013, the Rare Cancer Research Foundation (RCRF) has helped patients donate their tissue directly to researchers from over 115 hospitals, resulting in 58+ research models for rare cancers that have already provided countless research opportunities, scientific discoveries, and urgent hope.

Our patient-powered platform aims to fundamentally change how patients can advocate for their care while empowering the development of effective treatments through the donation of tissue samples and data for research. 

Tissue Donation

Donating tissue samples is the most effective way patients can help researchers make medical breakthroughs and advance the development of new treatments. We coordinate the safe transportation of live tissue, post-surgery, to research projects or our biobank.

Biobank

Stored tissue has great value for researchers and for patients themselves.  The Pattern.org Biobank is a shared resource across the rare cancer community, bringing together tissue from across institutions and rare cancer types to create a powerful engine for research and discovery. 

Powerful Tools and Resources

COMING SOON. Building tools for all rare cancer patients to access more information about their cancer and treatment options including

  • An online portal for sharing your data and history with clinicians and researchers

  • Disease-specific resources including open clinical trials, literature searches, and specialists

  • Genomic sequencing for every Pattern.org patient to support patients finding more targeted treatment options

120+

Partner Institutions within the USA

95%

Tissue Collection Success Rate

65+

Rare Cancer Models Developed

Our Work

Over 400,000 people every year are diagnosed with rare cancer, yet most rare cancers do not have effective treatments.

Led by a team of multidisciplinary scientists, cancer patients, and clinicians, our work is guided by the experiences, needs, and voices of those with rare cancer and the researchers whose mission it is to one day find a cure for these diseases.

We are building the tools and infrastructure that empower patients to advocate for their care while directly impacting cancer research.

FAQs

  • Rare cancers are defined as those with an incidence of fewer than six cases per 100,000 people each year. RCRF is a part of the movement of rare cancer patients as the champions of precision medicine. When you look close enough at any cancer, it becomes rare because it is unique. We build a big tent approach where rare cancer patients are leading the way, and everyone with any cancer diagnosis will benefit.

  • Over 400,000 people every year are diagnosed with a rare cancer in the US. Rare cancers represent 27% of all cancer diagnoses, and the 5-year survival rate is lower for patients diagnosed with a rare cancer.

  • There are many different types of rare and less common cancers, as well as rare subtypes of common cancers. Some examples of these cancers include gallbladder cancer, neuroendocrine tumors, uveal melanoma, penile cancer, pseudomyxoma peritonei (PMP) tumor, small bowel cancer, soft tissue sarcoma and upper tract urothelial cancer (UTUC).

  • Pattern.org enables cancer patients to donate their tumor tissue and medical data directly to research. Once you enroll, Pattern.org will link you to a specific research project studying your cancer. You can then learn about the study and review and sign an informed consent if you wish to contribute. If you choose to contribute, we will arrange the transfer of your cancer tumor on your behalf.

  • It's always your choice to donate tissue samples or medical data, and if you decide to do so, there are rules and ethical guidelines in place to protect you. Your donated tissue can help drive research that helps others in the future and researchers can only use your biospecimens if they have your consent.

  • We have collected a number of valuable resources for patients with rare cancers, which can be found here: https://rarecancer.org/resources

    We also partner with a number of rare cancer patient advocacy foundations and support groups, which can be found here: https://rarecancer.org/patients-advocacy-partners