SDH-deficient GIST

Partnership for Survival – Treating the Rarest of the Rare

Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.

By |2020-02-28T14:30:39-05:00February 27th, 2020|Advocacy, News, Research|

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|

New in SDH-Deficient Research – The Paraganglioma* Preclinical Project

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. [...]

By |2018-12-17T14:34:57-05:00December 17th, 2018|News, Newsletter, Research|
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