Hereditary pheochromocytoma-paraganglioma

Get in touch with RARE Concierge.

Contact RARE Concierge

Synonyms: Familial pheochromocytoma-paraganglioma

A rare hereditary pheochromocytoma/paraganglioma tumor arising from neuroendocrine chromaffin cells of the adrenal medulla (pheochromocytoma) or from any paraganglia from the skull base to the pelvic floor (paraganglioma). Clinical manifestations are often linked to excess catecholamines production causing sustained or paroxysmal elevations in blood pressure headache episodic profuse sweating palpitations pallor and apprehension or anxiety. Hereditary pheochromocytoma/paraganglioma tumors tend to present at younger ages to be multi-focal bilateral and recurrent or to have multiple synchronous neoplasms.

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on Data version June 2024

Newly diagnosed with
Hereditary pheochromocytoma-paraganglioma?

Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.

Get Concierge Help

Advocacy Organizations

The National Adrenal Diseases Foundation

The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life. Our goals are: To stop death from undiagnosed Addison’s disease. To improve life quality of those who suffer from adrenal disease. To promote the study of adrenal disease to improve treatment and find cures.

Don't see your organization here. Let us know here.

Clinical Trials

For a list of clinical trials in this disease area, please click here.