The 2026 NIH Succinate Dehydrogenase (SDH) and Ultra Rare GIST Clinic was held at the National Institutes of Health (NIH) in Bethesda, Maryland on June 9th & 10th. The Clinic was a collaboration amongst researchers, specialists, patient advocates, patients and family members, with the goal of furthering the knowledge of non-KIT, PDGFRa-mutated Gastrointestinal Stromal (GIST) tumors. Patients were identified by experts working in the field of ultra rare GISTs and by patient advocates at The Life Raft Group. Patients were recommended for the clinic based on the complexity of their case and their need for advice on treatment options. Both an in-person and virtual attendance alternative was available for the specialists and patients.
An expert panel of 17 International experts consisting of medical oncologists, surgical oncologists, and genetic counselors from both inside and outside of the NIH reviewed the medical records, scan images, clinical history and outcomes of the 10 patient clinic participants. The panelists then met individually with each patient and their family, responding to each patient’s questions and needs.
In addition to the unique opportunity to bring patients together with a panel of experts, the Clinic provided an opportunity for participants and their families to meet and bond with each other. Dr. Andrew Blakely, MD, provided an SDH-deficient GIST 101 educational presentation for the patients and caregivers to improve their knowledge and promote their active involvement in the therapeutic decision-making process.
An SDH-Deficient GIST 101 recorded by Dr. Blakely at Life Fest 2024 for patients & caregivers who attended.
