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.
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.
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.
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.
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.
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.
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.
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.
“You're off to Great Places! Today is your day! Your mountain is waiting, So... get on your way!” ― Dr. Seuss, Oh, The Places You'll Go! Dear SDH-deficient GIST [...]
PDF is available of LRG Science to print here. An oncologist in Chennai, India, 8,366 miles away from the Life Raft Group’s Wayne, New Jersey office, is running out of treatment [...]