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

Dr. Peter Crane speaks with Barbara Van Hare, President of pattern.org, about a powerful way patients with solitary fibrous tumor and other rare cancers can contribute to research by donating tissue and clinical data. Essential listening for patients, oncologists, and researchers working on rare cancers. ⏱️ Timestamps: 00:00 – Introduction and welcome 01:00 – Barbara Van Hare’s background and family connection to rare cancers 03:00 – Founding of the Rare Cancer Research Foundation 06:00 – Challenges of researching rare cancers and institutional barriers 08:00 – How pattern.org works: patient consent and tissue/data donation process 10:00 – Details on fresh tissue kits and self-cooling technology 13:00 – Accepting stored/archived tissue samples 15:00 – Navigating hospital policies and high success rate 19:00 – Benefits of a centralized biobank vs. siloed institutional samples 24:00 – Incidental findings and supporting clinicians/patients 27:00 – Personal story on the power of genomic data (POT1 mutation) 31:00 – Costs, funding model, and accessibility 34:00 – Donating medical records and sequencing data 37:00 – How to get involved and closing thoughts 🔗 Resources Mentioned pattern.org rarecancer.org Barbara Van Hare: [email protected] 👍 If this episode helped you, please like, subscribe, and share. It helps these conversations reach the physicians who need them most. #DoctorsMakingADifference #RareCancer #PatternOrg #SolitaryFibrousTumor #TissueDonation #Biobank #Sarcoma #RareCancerResearch #PatientAdvocacy #LivingWithCancer