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.
American Multiple Endocrine Neoplasia Support
Association for Multiple Endocrine Neoplasia Disorders
SDH-Deficient Cancer Research Advocates
Blogs
Ronny Allan’s Neuroendocrine Cancer Blog
Kari Dahl’s Blog, “Live: Lessons Learned from Living with a Rare Disease”
The Pheo Para Project 
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