Pheochromocytomas and paragangliomas are increasingly being recognized as part of a larger syndrome with a genetic root. Patients with these syndromes develop tumors with the potential to produce active adrenaline-like products that contribute to high blood pressure and vascular disease. In rare cases, these tumors may be malignant. Early recognition and treatment of these syndromes can substantially improve outcomes, and new advances in genetics can assist in identifying those at higher risk. Therefore, we have adopted a multi-disciplinary approach to pheochromocytoma-paraganglioma syndromes where endocrinologists, surgeons, and oncologists work together to provide patients with the optimal diagnostic and treatment plan. Treatment plans can involve medical therapies, surgical procedures, and systemic chemotherapies.
In addition, the Pheochromocytoma-Paraganglioma Genetics Group is a dedicated initiative involving adrenal endocrinologists and adrenal geneticists and genetic counselors to provide patients access to new genetic technologies that can identify their risk, or a family member’s risk, for developing pheochromocytoma-paraganglioma syndromes.