Hereditary pheochromocytoma-paraganglioma
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 http://www.orphadata.org. Data version May 2024
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Hereditary pheochromocytoma-paraganglioma?
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Advocacy Organizations
Adrenal Alternatives Foundation
Advocacy & Access for all cortisol care.
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
My Faulty Gene
My Faulty Gene is a nonprofit organization which provides information and assistance to any individual whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. We believe that everyone in need of genetic testing should have access to it.
My Little Sunshine Foundation
My Little Sunshine is a non-profit foundation dedicated to educating people about the importance of fertility preservation and making fertility resources accessible to all.
Pheo Para Alliance
The Pheo Para Alliance mission is to empower patients with pheochromocytoma or paraganglioma, their families and medical professionals through advocacy, education and a global community of support, while helping to advance research that accelerates treatments and cures.
SALUS
Educate and provide resources to POC with Rare Cancers
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
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.
Clinical Trials
For a list of clinical trials in this disease area, please click here.