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SDH Member Stories

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  2. SDH Member Stories
SDH Member StoriesLRG Staff2026-01-20T10:50:47-05:00

This is a collection of posts by LRG members who have faced the challenges of SDH-deficient GIST and other non KIT/PDGFRA subtypes. If you are interested in sharing your experience for the benefit of others, please email Carol Tordella, Sr. Director of Marketing & Communications at ctordella@liferaftgroup.org.

Resources for SDH-Deficient GIST Patients

SDH-Specific Glossary

SDH-Deficient GIST Specialists

Publications

SDH-Deficient GIST Consortium

Connect with SDH Chat

Join The LRG

How Can You Help?

Videos/Webcasts/Webinars

Member Stories

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SDH-deficient GIST Fact Sheet plus other resources for new GIST patients

SDH Fact Sheet
Newly Diagnosed Checklist
Starting Your GIST Education

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Join The Life Raft Group

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  • Patient Resource Toolkit
  • Understanding GIST
  • GIST Diagnosis
  • Risk of Recurrence
  • Types of GIST
    • KIT/PDGFRa Mutant GIST
    • SDH-Deficient GIST
    • Familial GIST
    • eGISTs
  • Mutations & Mutational Testing
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For Life

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The Life Raft Group

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Phone 973-837-9092
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The Life Raft Group is a 501 (c)(3) non-profit organization (tax id: 82-0547746) providing support through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor). View our 990 Form here

The information provided on the LRG site is designed to support, not to replace, the relationship that exists between a patient/site visitor and his/her physician. Read our Privacy Policy

International Patients

GIST knows no boundaries. The Life Raft Group focuses on several key pillars. One of those pillars is “to increase access to effective treatments worldwide.” We aid patients from the United Kingdom to India and Kenya, helping wherever GIST patients are in need. Our patient registry staff interacts with global patients daily. The LRG Patient Registry has members from 63 countries, with country liaisons from 61 countries. We present at international symposiums on GIST, support global advocacy issues, and work to establish alliances and collaborations. We want to ensure that GIST patients across the world have access to the best possible treatment.
International Patients - Advocacy & Information

 

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