SDH-Deficient GIST

Patient Advocate’s Story Unfolds in RARE Revolution Magazine

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.

By |2020-02-04T08:53:11-05:00February 4th, 2020|Advocacy, News, SDH-Deficient GIST|

News from the 17th NIH Pediatric and Wildtype GIST Clinic

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.

By |2019-12-19T11:25:54-05:00October 29th, 2019|News, Newsletter, 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|

LRG Webcast Series: Updates on the Temozolomide Trial

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.

By |2020-07-09T17:44:13-04:00September 16th, 2019|Clinical Trials, SDH-Deficient GIST, Webcast|

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|

The Pediatric & SDH-Deficient GIST Consortium

Our Commitment to the Biden Cancer Initiative We are excited to launch an innovative initiative to strengthen and advance research for effective treatments of a rare subset of Gastrointestinal Stromal Tumor (GIST) patients, who [...]

By |2018-10-30T12:14:09-04:00October 24th, 2018|Advocacy, Newsletter, SDH-Deficient GIST|
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