Support Groups

Support groups can offer great support in order to overcome and cope with burdensome diseases. 

Following you can find a list of relevant support groups in context of the adrenal gland. These support groups are either privately organized or medically or scientifically advised. 

Support groups offer the possibility for people sharing the same disease to come together in order to share coping strategies, experiences and advices. Patients feel more empowered and summon up strength by this sense of community. Please feel free to contact any of these support groups if you are interested. 

List of support groups:

List of german support groups for patients with adrenal diseases:

Verein für von der von Hippel-Lindau (VHL) Erkrankung betroffene Familien e.V. (http://www.hippel-lindau.de)

International list of support groups for patients with adrenal diseases:

Pheochromocytoma Support Group (http://www.pheochromocytoma.org/)

Pheochromocytoma Support Group. The US based pheochromocytoma support group is one of first supports groups established to provide information to assist patients with pheochromocytoma.

The Pheo-Para Alliance (http://www.pheo-para-alliance.org/)

The Pheo-Para Alliance — A patient-based organization established to promote support of research into pheochromocytomans and paragangliomas and assist patients and physicians cut through the maze of information related to neuroendocrine diseases so they can make informed decisions for the treatment of pheochromocytoma and paraganglioma.

 Pheochromocytoma Paraganglioma Patient Initiative (http://www.pheoparatroopers.org/)

This Pheochromocytoma Paraganglioma Patient Initiative is a non-profit group supporting patients with pheochromocytomas and paragangliomas.

VHL FamilyAlliance (http://www.vhl.org/)

The VHL FamilyAlliance provides information for families and physicians about von Hippel-Lindau syndrome. International VHL Support Organizations are established on five continents

TNational Adrenal Diseases Foundation (http://www.nadf.us/index.htm)

The National Adrenal Diseases Foundation is a US-based patient organization mainly dedicated to support people with Addison’s disease, other forms of adrenal insufficiency, and also Cushing’s syndrome.

AMEND (http://www.amend.org.uk)

The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is an international patient group supporting and informing anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine growths, which include adrenal tumors.

Medizinischer Informationsdienst zur Nebenniere (http://www.nebenniere.de/)

Medizinischer Informationsdienst zur Nebenniere für Ärzte und Patienten – German association established to support patients affected by adrenal cancer.

Surrenales (http://www.surrenales.com/)

French association established to support patients affected by adrenal cancer.

Adrenal Hyperplasia Network (http://www.ahn.org.uk/)

United Kingdom based group to provide support for all ages of individuals with Congenital Adrenal Hyperplasia (CAH).

Paradifference  www.paradifference.org

Tim Rothwells SDHB PHEOPARA COALITION http://www.sdhbcoalition.org/