SDH-Deficient GIST

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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.

By |2020-07-15T14:11:15-04:00July 14th, 2020|Advocacy, News, Research, SDH-Deficient GIST|

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.

By |2019-10-07T15:49:22-04:00October 7th, 2019|News, Research, SDH-Deficient GIST|

Treatment Responses in SDH-deficient GIST – LRG Science

The latest issue of LRG Science is titled, "Patient-reported Treatment Responses in Known/Likely SDH-deficient GISTS: An Analysis of The Life Raft Group Observational Registry." This study highlights the very unique research role that defines The Life Raft Group. Subscribe to LRG Science by emailing mgarland@liferaftgroup.org with the subject line SUBSCRIBE LRG SCIENCE.

By |2019-12-13T09:39:06-05:00August 13th, 2019|LRG Science, News, SDH-Deficient GIST|

LRG Webcast Series: Novel Therapies in GIST

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 [...]

By |2020-07-09T17:14:00-04:00July 31st, 2019|GIST Education, SDH-Deficient GIST, Video|

Pediatric & SDH-Deficient GIST Consortium Update

Setting the Pace for the Future In July of 2018 at Life Fest, The Life Raft Group brought together a team of pediatric & SDH-deficient GIST experts for a symposium focused on this rare [...]

By |2019-02-21T16:00:26-05:00February 21st, 2019|News, Newsletter, Pediatric GIST, SDH-Deficient GIST|
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