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GIST Support International - NIH Clinic for Pediatric GIST
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NIH Clinic for Pediatric and Wildtype GIST

The National Institutes of Health (NIH) and its branch the National Institute of Child Health and Human Development have announced an exciting initiative for those affected by pediatric GIST, Carney Triad, GIST from Carney-Stratakis syndrome, or other wildtype GIST.  Regardless of current age, patients diagnosed with GIST when they were children or young adults are eligible to register and participate, with many expenses paid.  In addition, patients with wildtype GIST (no mutations detected in the genes for KIT or PDGFRA) are now being included.

The clinics, which are held in Bethesda, Maryland at the NIH campus, are scheduled for June of each year (usually the thrid week of the month).  It is never too soon to sign up for the next clinic.  Space is limited, so do not delay signing up. 

2014 clinic:  May 21-23

For more information, send an e-mail to
You may also contact the scheduling staffperson as follows:
Lauren Meyerson Long
Research Nurse Specialist, Pediatric Oncology Branch. National Cancer Institute
Phone: (301) 496-0486
FAX: 301-451-5746

Link to the details in the pages listed below.

Link above to the official website of the NIH Pediatric & Wildtype GIST Clinic

Pediatric GIST Clinic Details from NIH:

information provided directly by NIH on how to register for clinics, funding, etc.

News From the First NIH Pediatric GIST Clinic:

Phyllis Gay's report on the June 2008 inaugural clinic

NIH Update: Second Clinic & Website:

news about the 2009 clinic and new NIH website

News from Second NIH Pediatric & Wildtype GIST Clinic

A summary of changes in the second clinic and plans for a clinical trial

Photos from the NIH clinics

Our photo gallery has a section for NIH clinic photos

NIH Webcasts and Posters on Pediatric & Wildtype GIST

webcasts of lectures from the clinics and posters presented at scientific meetings

News from Third NIH Pediatric & Wildtype GIST Clinic

Adult wildtype GIST patients attend third clinic.

News from Fourth NIH Pediatric & Wildtype GIST Clinic

 Guidelines and weekly Tumor Board plans are under development.

News from the Sixth NIH Pediatric & Wildtype GIST Clinic


News from the Seventh NIH Pediatric & Wildtype GIST Clinic


News from the Eighth NIH Pediatric & Wildtpe GIST Clinic


News from the Ninth Pediatric & Wildtype GIST Clinic (2012)

SDH involvement in wildtype GIST


News from the Tenth Pediatric & Wildtype GIST Clinic (June 2013)



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