Colectivo GIST España – la importancia de conocer la mutación de tu gist – SDH – Abril 8, 2021
Lea el artículo para Colectivo GIST España sobre la importancia de conocer la mutación de tu gist - succinato deshidrogenasa - Abril 8, 2021
Virtual Life Fest 2020: SDH Panel Summary
Over fifty participants attended a virtual meeting of SDH Experts in honor of GIST Awareness Day, July 13th, during Virtual Life Fest 2020. Questions were presented to the panel which included One of the first questions asked was “what specifically are your most challenging research hurdles and how can we, as patients and patient advocates from around the world help move research forward?”
RARE Partnership in Advocacy, Funding, and Research for Gastrointestinal Stromal Tumor
Partnerships and collaborations are critical to the progress of research in rare diseases. GIST specialist & Pediatric & SDH-Deficient GIST Consortium member, Dr. Jason Sicklick, and LRG member, Debra Melikian, are working together find a cure for succinate dehydrogenase-deficient gastrointestinal stromal tumors (SDH-deficient GIST), a hereditary rare cancer syndrome which claimed the lives of Debra’s husband and her son Merak.
Management of Adults with SDH-Deficient GISTs
Dr. Andrew Blakely, Program Director, Surgical Oncology Research Fellowship, National Cancer Institute, National Institutes of Health, shares how his team works with adult SDH-deficient GIST patients.
Partnership for Survival – Treating the Rarest of the Rare
Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.
Patient Advocate’s Story Unfolds in RARE Revolution Magazine
Deb Melikian, patient advocate, and Dr. Jason Sicklick, GIST expert & researcher, share the story of their unique partnership which began at an LRG GIST Day of Learning in the rare partners issue of RARE Revolution Magazine.
Discussing Progress in SDH-Related Diseases
Sara Rothschild, LRG VP Program Services, met with Othon Iliopoulos, MD, Harvard Medical School/Massachusetts General Hospital Cancer Center, to discuss how to understand and make progress in SDH-related diseases.
News from the 17th NIH Pediatric and Wildtype GIST Clinic
The NIH Pediatric and Wildtype GIST Clinic is a collaboration amongst researchers, specialists, patient advocates, patients and family members, with the goal of furthering the knowledge of SDH-deficient gastrointestinal stromal tumors (GIST) in order to develop more effective therapies.
17th NIH Pediatric and Wildtype GIST Clinic Held
The 17th Pediatric and Wildtype GIST Clinic was held at the National Institutes of Health in Bethesda, Maryland on September 25-27, 2019. The Clinic was a collaboration amongst researchers, specialists, patient advocates, patients, and family members, with the goal of furthering the knowledge of SDH-deficient Gastrointestinal Stromal (GIST) tumors in order to develop more effective therapies.
LRG Webcast Series: Updates on the Temozolomide Trial
Dr. Jason Sicklick of Moores Cancer Center at the University of California San Diego talks about the Phase II study of Temozolomide (TMZ) in advanced SDH-mutant/deficient GIST, a new study available to patients with SDH-deficient GIST.