Rare Cancer Research Foundation

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Durham, NC
Rare Cancer Research Foundation

Dedicated to finding cures for rare cancers by facilitating patient-centric research at pattern.org.

👉 linktr.ee/rarecancerrf

About a quarter of new cancer diagnoses are for rare cancers, while rare cancer deaths account for more than 40 percent of cancer deaths. RCRF translates oncology innovations for common cancers to treat rare cancers. Leveraging economies of scale, RCRF employs shared solutions to enable every rare cancer to have access to the research building blocks that will lead to a cure. For more information, go to www.rcrf.org

09/18/2025

📢 Calling all patients, advocates, and loved ones - please join us virtually on October 23 from 6:30 p.m. to 7:30 p.m. EST for a free webinar on the importance of Genomic Sequencing in the context of rare cancers.

Cody Barnett, Patient Advocacy from Illumina, is our honored speaker. You won't want to miss this opportunity to learn about the benefits of genomic sequencing and have your questions answered on how it works!

Register here: https://rcrf-org.zoom.us/webinar/register/WN_6nztdw9ORZCWOoQv-4GwKQ #/registration

09/17/2025

🥳 BIG NEWS: Our partner A Cure In Sight Ocular Melanoma has officially launched their Insight Biobank - powered by our initiative pattern.org! 👁

If you or someone you love has been diagnosed with , please consent to donate your tissue and/or medical data today through pattern.org, which will collect and store the samples and then they will be connected to high-impact researchers through The Insight Biobank!

▶️ Click here to read more about ACIS and the new biobank: https://rarecancer.org/news-updates/uniting-patients-and-accelerating-research-a-new-chapter-launches-for-a-cure-in-sight-and-rcrf

09/09/2025

Here’s the second half of our team! Together, we’re building a future with more answers for rare cancer patients. Swipe through to learn more about different team members! 👉

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09/01/2025

At RCRF, it is our strong belief that access to and awareness of genetic testing can both lead to preventive care and inform treatment options for rare cancer patients.

We spoke with Dan “Dry Dock” Shockley, a patient advocate who echoes the importance of testing in the saving of lives through his journey with a rare genetic mutation.

Click here to read the story: https://rarecancer.org/news-updates/turning-diagnosis-to-purpose-a-conversation-with-navy-veteran-dan-dry-dock-shockley

08/28/2025

At RCRF, it’s the people behind the mission who make the work possible. Each member of our team brings passion, expertise, and heart to improving the lives of rare cancer patients. Swipe through to learn more! 💙💚

08/26/2025

Here at RCRF, we extend our gratitude to those who have served or continue to serve our country. 🇺🇸 According to the Oncology Nursing Society in 2023, 16% of cancer diagnoses for veterans were considered rare.

If you are a who has been diagnosed with , please visit pattern.org to learn more about how you can advance research for your disease.

08/21/2025

Hey, community! We’re testing your knowledge in this quiz. Swipe through, record your answers, and then check the answer key at the end to see how you did. Comment below how many you got right! 👇

08/19/2025

August is Awareness Month, and RCRF’s Operations Coordinator Heather Ronshaugen bravely chose to share her story with us to honor her journey and the journey of others who are impacted by this disease.

Every patient story matters, especially for .

Read Heather's story here: https://rarecancer.org/news-updates/heathers-story-in-honor-of-appendix-cancer-awareness-month

08/14/2025

📣 HEADS UP: We’re conducting a survey with a goal of identifying cancer therapies that may be difficult to access for patients with rare cancers. Access may be limited by availability, cost, or a related barrier.

Our goal is to identify these therapies so we can help find a supply solution and lower costs for patients in need.

If you are a patient, care provider, or advocate, we seek your feedback. Please click the link below to access this quick, 2-minute survey. 💙💚

https://lp.constantcontactpages.com/sv/FwvKShG/therapyaccesssurvey

08/12/2025

At RCRF, we know how important it is to protect your personal information. That’s why any tissue or data you donate is de-identified. This means your name and identifying details are removed.

We follow strict privacy and security protocols because we understand that trust is earned. We honor the courage it takes to share your story, tissue, or data, and we are committed to safeguarding it every step of the way. 💙💚

08/07/2025

Are you someone who has experienced ? No matter what type or when, we want to hear from you! Your story has power and your experience can inspire others, drive awareness, and build a sense of community.

Share your story to help others feel less alone and to show the world what rare cancer really looks like. Do you know someone who should share their story? Send them this post!

Click the link in our bio to tell us more today or visit rarecancer.org/story 💙💚

07/31/2025

present unique obstacles. The scarcity of tumor models, limited access to tissue, and small patient populations often stall progress. At institutions, even when samples are collected, they may sit unused in freezers indefinitely, especially if only a small portion was used by the original research team.

Our Pattern Biobank was created to change that, as each donation is processed in a way that allows it to be divided and distributed across multiple studies and institutions. This ensures every sample reaches its full research potential and is shared for maximum impact!

Read more about the at the link in our bio. 💚💙

Address

703 Foster Street
Durham, NC
27701

Website

http://rarecancer.org/, http://pattern.org/, http://linktr.ee/rarecancerrf

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