Resources

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.

Pheo Para Alliance

Von Hippel Lindau Alliance

American Multiple Endocrine Neoplasia Support

Association for Multiple Endocrine Neoplasia Disorders

Neurofibromatosis Network

SDH-Deficient Cancer Research Advocates

INCA

NET Cancer Day

Blogs

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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