New Study Aids in the Diagnosis of Hereditary Paraganglioma and Pheochromocytoma

A recent study in Cancer Genetics, International initiative for a curated SDHB variant database improving the diagnosis of hereditary paraganglioma and pheochromocytoma, is important for GIST patients who carry a germline SDHB mutation

By |2021-09-09T11:41:15-04:00September 9th, 2021|News, Pediatric GIST, Research, SDH-Deficient GIST|

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|

Q&A with SDH Panel of Experts Yields Promise for the SDH-deficient GIST Community

The Life Raft Group celebrated GIST Awareness Day 2021 by holding an virtual, interactive Q&A session for SDH-deficient GIST patients with leading experts in the field.

By |2021-07-29T11:58:30-04:00July 29th, 2021|News, Research, SDH-Deficient GIST|

NIH Pediatric & Wildtype GIST Clinic 2021 Applications Are Open!

The LRG will be collaborating with the NIH again in 2021 to hold the Virtual GIST Tumor Board in place of the NIH's Pediatric & Wildtype GIST Clinic normally held in the DC area. Applications to have cases reviewed are now open.

By |2021-04-23T10:48:08-04:00April 29th, 2021|News, Pediatric GIST, SDH-Deficient GIST|

Virtual Life Fest 2020: SDH Panel Summary

Over fifty participants attended a virtual meeting of SDH Experts in honor of GIST Awareness Day, July 13th, during Virtual Life Fest 2020. Questions were presented to the panel which included One of the first questions asked was “what specifically are your most challenging research hurdles and how can we, as patients and patient advocates from around the world help move research forward?”

By |2020-09-09T14:20:33-04:00August 31st, 2020|Events, News, 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 |2021-01-13T11:53:21-05:00July 14th, 2020|Advocacy, News, Research, 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|
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