Paraganglioma Clinic

Our team of experts is committed to making sure patients with paragangliomas and/or genetic risk for these tumors receive the best possible care. Our 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 patient. Because we oversee care for hundreds of patients with this syndrome, you can be assured that you are in the care of a team that has the experience needed for this rare condition.

Paragangliomas are rare neuroendocrine tumors that occur in the peripheral nervous system or adrenal glands. Paragangliomas may also be known by these names:

• Carotid body tumors
• Pheochromocytomas
• Glomus jugulare
• Extra-adrenal paragangliomas

Experts recommend all people with paragangliomas get genetic testing, since up to 40% of these tumors are hereditary. People with hereditary paragangliomas may be at risk for other tumors. Mutations in the SDHx genes increase someone’s risk for paragangliomas, tumors in the digestive system (called gastrointestinal stromal tumors, or GISTs), and kidney cancer. People with SDHx mutations can get blood tests and imaging tests to screen for these tumors.

The Paraganglioma Clinic helps patients and their families create personal screening plans. We also help schedule follow-up care for people at high risk for paragangliomas. Our health care team includes specialists in every area of paraganglioma care. Our goal is to provide a cohesive and patient-centered approach.