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.