SDH Cancer
SDH Cancer

Who are we?

We are a group of SDH-deficient GIST patients, family members, or caregivers. Our Mission is to promote SDH-deficient GIST research, recognizing it as a unique tumor with different biology than c-KIT/PDGFRa mutated GIST.  We seek to help active SDH-deficient GIST researchers in obtaining fresh or viably frozen tumor tissue, to educate patients on the importance of donating their tumors and to be a portal to labs in need of funding.


We are an all-volunteer, patient-centered, grassroots group.  Many of us have an inherited DNA mutation that may also affect other family members. We are dedicated to doing what we can to find a cure, which currently does not exist. 


We’re taking inspiration from our "Stage IV incurable" diagnoses as stepping stones rather than tombstones.



"Patients not Politics"


Contact us

SDH-Deficient Gist Cancer Research - Seeking Solutions for an Incurable Cancer


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