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.
2013 clinic: June 26-28
For more information, send an e-mail to firstname.lastname@example.org.
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
Link to the details in the pages listed below.
Link above to the official website of the NIH Pediatric & Wildtype GIST Clinic
information provided directly by NIH on how to register for clinics, funding, etc.
Phyllis Gay's report on the June 2008 inaugural clinic
news about the 2009 clinic and new NIH website
A summary of changes in the second clinic and plans for a clinical trial
Our photo gallery has a section for NIH clinic photos
webcasts of lectures from the clinics and posters presented at scientific meetings
Adult wildtype GIST patients attend third clinic.
Guidelines and weekly Tumor Board plans are under development.
SDH involvement in wildtype GIST