Rare Cancer Research Foundation

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

Sometimes, the most meaningful moments in cancer research happen far from the laboratory.

Read the full story at https://rarecancer.org/news-updates/more-than-a-tissue-collection-kit

Stay updated with RCRF's monthly insights! Check out The Connect newsletter in your inbox now, or at

The Connect: Accelerating Cures Through Patient-Powered Collaboration Email from Rare Cancer Research Foundation Read the latest from RCRF Dear Friend, Sometimes, the most meaningful moments in cancer research happen far from the laboratory. Recently, I found myself sta

This Sarcoma Awareness Month, we're excited to share a major step forward: Rare Cancer Research Foundation is partnering with UNC Lineberger Comprehensive Cancer Center to support sarcoma patients in donating tissue and health data for research.

Read the full announcement: https://rarecancer.org/news-updates/sarcoma-registry-partnership

Barbara Van Hare joined Peter M. Crane, MD on his podcast, Living with Metastatic Cancer. Check it out at

Rare Cancer Breakthroughs: How Tissue & Data Donation Saves Lives | Barbara VanHare | LMC#89 Podcast Episode · Doctors Making A Difference · June 25 · 40m

Our new poster, Patient-driven N-of-1 Longitudinal Multi-Omic Study of Uveal Melanoma Identifies Functional Loss of BAP1 VUS and Evolving Tumor-Immune
Dynamics, is now available to read on the RCRF website at https://rarecancer.org/publications

Thank you to authors Benjamin D. Kamphaus, Jennifer L. McQuade, Hana E. Littleford, Robin Kageyama, Jessica L. Scales, Christine N. Spencer, and Marshall A. Thompson.

CTO Marshall Thompson presented our new research poster on uveal melanoma at the AACR Special Conference in Cancer Research: Breaking Barriers in the Fight Against Rare Cancers.
Pictured with Gayathri Devi, Hollings Cancer Center, Medical University of South Carolina.

A study out of the National Cancer Institute, published in an AACR journal, analyzed over 2.4 million U.S. cancer cases and found that men were diagnosed at later stages than women across 20 different nonreproductive cancer types. Since stage at diagnosis is one of the strongest predictors of survival, this pattern may help explain why men die from cancer at higher rates overall.
Many of these cancers are also rare. Findings like these are a reminder of why data matters so much in cancer research. Patterns like this only surface when we have large, detailed datasets to study. At RCRF, that's exactly the kind of insight we're working to make possible for rare cancers, where the data gaps are even wider.
Read the article at https://conta.cc/4yrgo12

Today is Leiomyosarcoma Awareness Day.

LMS is rare, but the community around it is strong. Patients, families, clinicians, and researchers all working toward the same goal: better treatments and better outcomes.

If you've been affected by LMS, your experience and your tissue can directly fuel the research building toward that future. Learn more at pattern.org

Today is Glioblastoma Awareness Day.

If you or someone you love is facing this diagnosis, you're not alone. Researchers are making real progress: new approaches in immunotherapy, targeted treatments, and a deeper understanding of tumor biology are opening doors that didn't exist a few years ago.

Progress like this happens because of patients and families who share their stories, advocate for research funding, and keep pushing the field forward.