SDH-deficient GIST

Home/Tag: SDH-deficient GIST

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|

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|

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|
Go to Top