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GIST Support International - SDH-deficient & Wildtype GIST
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Our WILDTYPE GIST listserv is for patients of any age with wildtype GIST (no mutations in KIT or PDGFRA or BRAF), including SDH-deficient GIST, pediatric GIST, Carney Triad, and Carney-Stratakis GIST-paraganglioma dyad.

Gastrointestinal stromal tumor  (GIST) in children and adolescents is extremely rare.  In contrast to adult GIST, which is usually caused by mutations in the genes for KIT or PDGFRA, most cases of GIST in children and adolescents show no mutations in these genes.  GIST without mutations in KIT or PDGFRA is referred to as wildtype GIST. About 10-12% of adult GIST patients have wildtype GIST.  Young people between ages 18 and 30 years old may develop either adult-type mutant GIST or the pediatric-type wildtype GIST.  Many wildtype GIST patients have defects in succinate dehydrogenase function, as described further in following sections.  Defects in succinate dehydrogenase genes are associated with Carney-Stratakis Dyad of GIST plus paraganglioma.   Research to identify genetic abnormalities that may be responsible for wildtype GIST, pediatric GIST, Carney-Stratakis Dyad, and Carney Triad is a very active pursuit. 


JOIN Our e-mail Community

Click here to join our listserv for wildtype GIST patients (adult and pediatric) and their family members and friends.


Read Mail and Search Archives

Subscribers to our list can access the mail and searchable archives by clicking Mail & Archives.
You will be asked to “log in” with your password before viewing the archives.  If you have not set up a password yet just follow the instructions to do so.  Once you set up a password, as long as you do not "log off" then you will not need to enter the password again if you are still using the same computer and you have not deleted the cookie.  Choose a password you can remember easily (or write it down in your wallet) so you can access the mail from a different computer while you are away from home.



To contact us about SDH-deficient GIST, wildtype GIST, pediatric GIST, Carney Triad, Carney-Stratakis Dyad GIST, or other GIST in young patients, e-mail us at this address:


More Information

Please see our pages on


Physicians with Expertise in Pediatric GIST

It is important to find physicians who have experience with these rare cases.  The following table includes physicians identified by parents involved in our listserv.  Please contact us at if you wish to have another physician's name included.  Click the name to link to a descriptive website, if available.


Physician Specialty Location
Cristina Antonescu, MD pathology Memorial Sloan Kettering Cancer Center
Francine Blei, MD pediatric oncology New York University Medical Center
J. Aidan Carney, MD, PhD pathology (emeritus but still active in Carney Triad cases) Mayo Clinic, Rochester
Katherine A. Janeway, MD pediatric oncology Dana Farber Cancer Institute
Children's Hospital, Boston
Michael LaQuaglia, MD pediatric surgery Memorial Sloan Kettering Cancer Center
Jed Nuchtern, MD pediatric surgery Texas Children's Cancer Center
Alberto Pappo, MD pediatric oncology Texas Children's Cancer Center
Patrick Schöffski, MD oncology University Hospital Gasthuisberg of the Catholic University, Leuven, Belgium
Constantine A. Stratakis, MD endocrinology & genetics National Institute of Child Health & Human Development
Daniel von Allmen, MD pediatric surgery  
William F. Young, Jr, MD adolescent endocrinology (for Carney Triad) Mayo Clinic, Rochester




Useful Resources

The non-pediatric sections of our website include lots of information that is also relevant to GIST in children, adolescents, and young adults.  Please check some of these pages...




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