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Specialty Clinics

Useful links for

SDH Diagnosis-related Clinics:

During the course of receiving a proper diagnosis for their cancer, patients with rare diseases may encounter a medical system ill-equipped to answer their questions.  Consulting with a Specialist who has experience with your type of cancer is important.  Don’t be afraid to get a second opinion.  It’s okay to be upfront with your physician about your desire to gather more information. If your physician doesn’t support you or gives you a difficult time, it might be time for a new doctor.

NIH Pediatric and Wildtype GIST Clinic:

Huntsman Cancer Institute Paraganglioma Clinic:

An annual collaborative event held at the National Institute of Health in Bethesda, Maryland involving clinicians, research scientists, patients, and advocates.  The Clinic provides an opportunity for Pediatric, Wildtype, and SDH-deficient Gastrointestinal Stromal patients to be evaluated and receive treatment recommendations from specialists from around the world. Click here to learn more.

A team of experts at the University of Utah is committed to making sure patients with paragangliomas and/or genetic risk for these tumors receive the best possible care. Their team of surgeons, medical oncologists, genetic counselors , and other specialists work together to develop a care plan designed to meet the unique needs of each patients.  Click here to learn more.

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