Information and Support

Pheochromocytoma and paraganglioma are associated with mutations in about twenty different genes which cause a dozen inherited syndromes. Other groups which offer support to persons with pheo/para and/or the syndromes with which they may be associated are listed below.

Von Hippel Lindau Alliance

American Multiple Endocrine Neoplasia Support

Association for Multiple Endocrine Neoplasia Disorders

Neurofibromatosis Network

SDH-Deficient Cancer Research Advocates


NET Cancer Day

Pheochromocytoma Support Foundation


Ronny Allan’s Neuroendocrine Cancer Blog

Kari Dahl’s Blog, “Live: Lessons Learned from Living with a Rare Disease”

Miranda Simard’s Blog, “Pheo vs Fabulous”

Michelle Whipple Williams’s Blog, That I Would Be Free…

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