The Pediatric SDH-Deficient GIST Consortium, which was launched at the Biden Cancer Summit, consists of an impressive team of researchers, clinicians, academics, and patient advocacy groups. A member of our consortium, Dr. Joshua D. [...]
Click these icons for additional resources for SDH-Deficient GIST patients including fact sheets, specialists, publications, support groups, webinars & videos and more. SDH-Specific Glossary SDH-Deficient GIST Specialists Publications SDH-Deficient GIST Consortium Connect [...]
The Life Raft Group is a community open to GIST patients, their caregivers and family members, and also to physicians, researchers, and others interested in learning more about GIST and helping those with the [...]
WAYNE, N.J. and WASHINGTON, D.C. (September 21, 2018) - The Life Raft Group announces at the Biden Cancer Summit a new initiative to strengthen and advance research for effective treatments of a rare subset of [...]
The 2018 Life Fest Meeting was held in Miami on July 13 - 15 and was attended by 140 patients, friends, family and caregivers. This was a truly international event, with participation from 20 [...]
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.
The LRG, in collaboration with the Pediatric & SDH-Deficient GIST Consortium and key opinion leaders among the GIST pathology community (with Dr. Brian Rubin taking the lead), played a significant role in changing CAP Guidelines. CAP Guidelines are protocols for pathologists to instruct them on the process of diagnosing a disease based on tumor tissue samples.
In this article, Mom Glenda Swinbourn of Australia shares the story of her son Mitchell, a 13-year old with Carney-Stratakis Dyad. It is for patients like Mitch that the Pediatric & SDH-Deficient GIST Consortium was founded.
In 2022, our theme, “It’s Time to Tell the Stories,” marked a significant milestone as we celebrated 20 years of non-profit service. See our 2022 Annual Report.
It is with great sorrow that we share that GISTer and LRG Board Member Eric Biegansky passed away yesterday, August 3rd, 2023.
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