Pediatric SDH-Deficient GIST Consortium

NIH Pediatric & Wildtype Clinic’s ‘Virtual Tumor Board’ Hosted by the LRG

The LRG worked with the NIH to create a collaborative model to serve the needs of Pediatric & SDH patients, hosting a virtual tumor board on June 25th to replace the in-person Pediatric & Wildtype Clinic which the NIH holds annually.

By |2021-08-24T15:19:29-04:00August 24th, 2021|News, Patient Support, SDH-Deficient GIST|

It’s Time: The Life Raft Group Biomarker Testing Campaign – Identify Subsets & Clinical Trials

Identifying rare subsets of GIST and starting new clinical trials is critical. Read here about one researcher's clinical trial progress.

By |2021-09-27T14:37:39-04:00June 25th, 2021|Mutational Testing, News|

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|

New Horizons – Pediatric & SDH-Deficient GIST Consortium Update: A Review with Experts & Advocates

A Pediatric & SDH-Deficient GIST Consortium Update: A Review with Experts & Advocates presented by Jayne Bressington, Becky Owens, and Dr. Jason Sicklick at New Horizons 2019 in Wayne, NJ.

By |2019-08-30T10:37:28-04:00August 30th, 2019|Events, Global, 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|

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|

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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