The Life Raft Group celebrated GIST Awareness Day 2021 by holding an virtual, interactive Q&A session for SDH-deficient GIST patients with leading experts in the field.
GISTer Bill Borwegan shares his inspiring GIST journey illustrating the importance of biomarker/ mutational testing and self-advocacy as a rare disease patient.
Identifying rare subsets of GIST and starting new clinical trials is critical. Read here about one researcher's clinical trial progress.
The LRG will be collaborating with the NIH again in 2021 to hold the Virtual GIST Tumor Board in place of the NIH's Pediatric & Wildtype GIST Clinic normally held in the DC area. Applications to have cases reviewed are now open.
SDH-Specific Glossary SDH-Deficient GIST Specialists Publications SDH-Deficient GIST Consortium Connect with SDH Chat Join The LRG How Can You Help? Videos/Webcasts/Webinars Member Stories SDH Fact Sheet Newly Diagnosed Checklist Starting Your [...]
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.
SPAEN (Sarcoma Patients EuroNet) Presents Webinar Webinar "Novel therapy options in GIST: What's on the horizon?" was presented by Dr. Jonathan Trent, Professor of Medicine, Associate Director, Clinical Research Director, Sarcoma Medical Research Program Sylvester [...]
See our complete GIST Glossary DNA hypermethylation - DNA methylation is a process by which methyl groups are added to the DNA molecule. Methylation can change the activity of a DNA segment without changing the sequence. When located in [...]
ASCO 2019 LRG Directors attended the Annual American Society of Clinical Oncology (ASCO) Conference to network and research collaboration possibilities among over 40,000 doctors, researchers, pharmaceutical companies, and other patient advocacy groups. Left [...]
All patients with SDH-deficient GIST (stains SDHB negative) are advised to see an SDH-deficient GIST specialist. Oncologists and/or surgeons that specialize in this rare disease are listed below. For full list of GIST Specialists [...]
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