Welcome to "EPPREF"!
EPPREF, the Erythropoietic Protoporphyria Research and Education Fund is a support group exclusively for patients with EPP and their families. EPPREF has no dues -- membership is free (we are supported by optional donations from members and support from foundations and industry). EPPREF has been in existence since 1978, and we are always happy to welcome new EPP people into our group. It's pretty tough having a rare disease, so we know that it is comforting to find a support group of people who have your disease and who understand what you are going through. For more information on becoming a member, please call or write us directly.
We strongly urge you to also join the American Porphyria Foundation (P.O. Box 22712, Houston, TX 77227; 713-266-9617). Although they do not focus just on EPP, they serve people who have any kind of porphyria. Uniting all porphyria sufferers is valuable, especially when it comes to lobbying the Government and health insurance companies -- in numbers there is strength!
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