New SDH Tissue Testing Collaboration with NIH & UCSD
The LRG is partnering with the NIH and UCSD to create the first ever tumor biobank in the U.S. focused specifically on SDH-deficient GIST.
Medical Advisory Board Member Dr. Sameer Rastogi, AIIMS Team Publish Study on SDH-deficient GIST
Medical Advisory Board Member Dr. Sameer Rastogi and the AIIMS Team Publish Study on SDH-deficient GIST titled, "Succinate dehydrogenase deficient GIST: Case series and review of literature from a tertiary care centre in India".
A Conversation with Dr. Jason Sicklick
In this interview with researcher & surgical oncologist Dr. Jason Sicklick shares about his passion for SDH-deficient GIST research.
New Study Aids in the Diagnosis of Hereditary Paraganglioma and Pheochromocytoma
A recent study in Cancer Genetics, International initiative for a curated SDHB variant database improving the diagnosis of hereditary paraganglioma and pheochromocytoma, is important for GIST patients who carry a germline SDHB mutation
New Studies Published on SDH Models and GIST Research
Two new studies were published in July and August 2021 focusing on SDH-deficient tumor models and how location can affect GIST tumor profiles and drug sensitivity.
NIH Pediatric & Wildtype Clinic’s ‘Virtual Tumor Board’ Hosted by the LRG
The LRG worked with the NIH to create a collaborative model to serve the needs of Pediatric & SDH patients, hosting a virtual tumor board on June 25th to replace the in-person Pediatric & Wildtype Clinic which the NIH holds annually.
Q&A with SDH Panel of Experts Yields Promise for the SDH-deficient GIST Community
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.
Genetic Testing Recommended for SDHx Mutation Carriers
This study strongly recommends genetic testing and regular biochemical testing and clinical exams for SDHx mutation carriers.
NIH Pediatric & Wildtype GIST Clinic 2021 Applications Are Open!
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.
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?”