Rare Cancer Breakthroughs: How Tissue & Data Donation Saves Lives | Barbara VanHare | LMC#89

This episode is sponsored by NURP NURP helps busy physicians grow their wealth through AI-powered algorithmic trading designed for demanding careers. No day trading, no guesswork, and no constant market watching required.  Ready to put your money to work? Visit start.nurp.com/doctors  to learn more.  Trading involves risk, and results may vary. This is not financial advice. ------------------------------------------------------------- In this episode of Living with Metastatic Cancer, Dr. Peter Crane (physician and SFT patient) interviews Barbara Van Hare. They explore the challenges of researching rare cancers due to small patient numbers, scattered data, and institutional hurdles. Barbara shares how pattern.org empowers patients to donate fresh or stored tissue and medical records, making them available to researchers globally through a de-identified biobank and data commons. The conversation covers the practical donation process, benefits for patients and clinicians, funding model, incidental findings, and the power of aggregated data in driving discoveries for rare cancers like SFT, sarcomas, and others. Episode Highlights Barbara’s personal connection to rare cancers through family history and her nephew Mark’s founding of the Rare Cancer Research Foundation The mission of pattern.org: centralizing excess tissue and clinical data from patients across the US to support researchers Step-by-step patient donation process, online consent, kits for fresh tissue (with self-cooling technology), and support for stored tissue/blocks How Pattern navigates institutional and regulatory barriers with a ~95% success rate in obtaining consented samples Benefits of a centralized, open-source biobank and data commons vs. siloed institutional collections No cost to patients or institutions; researchers pay modest fees for tissue access (data is free for most) Potential for incidental findings to benefit individual patients and the value of genomic sequencing data Importance of patient-initiated and clinician-supported donations for building meaningful research cohorts in ultra-rare cancers like SFT Top 3 Takeaways Patients with rare cancers hold the key to progress,  donating excess tissue and data through pattern.org directly accelerates discoveries that individual institutions often cannot achieve alone. Pattern.org makes participation simple and low-burden with online consent, pre-packaged kits, and full support for navigating hospital processes. Centralized biobanks and data commons are essential for rare disease research; aggregating samples and information enables pattern recognition and new therapies that small, scattered datasets cannot. About Barbara VanHare Barbara Van Hare is President of pattern.org and has been with the Rare Cancer Research Foundation since 2014. With a background in sales and marketing from Hallmark Cards, she brings patient advocacy and operational expertise to bridge the gap between rare cancer patients, advocacy groups, and researchers. Her family’s experiences with multiple rare cancers drive her commitment to removing barriers in tissue and data access. Connect with Barbara Van Hare pattern.org rarecancer.org Email: [email protected] or [email protected]   ABOUT THE HOST: Dr. Peter Crane is a board-certified physician, educator, and storyteller with a heart for service and a calling to spotlight doctors who make a difference—in their communities, in medicine, and in the lives they touch. Through Doctors Making a Difference, he brings you into intimate conversations with physicians who have overcome challenges, redefined success, and found purpose in and beyond the clinic. His goal is simple: to help more doctors stay in medicine by showing them what's possible. About the Show: Doctors Making a Difference is more than a podcast—it’s a movement to highlight the good, the gritty, and the deeply human side of medicine. In every episode, Dr. Peter Crane interviews physicians whose stories defy the script. From burnout recovery to bold career pivots, health challenges to quiet leadership, this show honors the truth that healing begins with connection—and doctors, too, deserve to be whole. Visit: doctorsmakingadifference.com LMC Series Note: Living with Metastatic Cancer (LMC) explores the science, decisions, and day-to-day realities of life with advanced disease—through candid physician–patient conversations The Doctors Making a Difference Podcast is for informational purposes only and does not substitute for medical, legal, or professional advice. Always consult appropriate experts regarding your unique circumstances. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.