Porphyria

Self Help Clearinghouse

American Porphyria Foundation

National network. Founded 1981. Supports research, provides education and information to the public, patients and physicians. Networks porphyria patients and support groups. Quarterly newsletter, pen pal program, phone network. Group development guidelines available. Donation $35/yr.
Write:
American Porphyria Foundation
P.O. Box 22712
Houston, TX 77227
Voice: 713-266-9617 (Mon.-Fri., 9am-4pm CST)
Fax: 713-840-9552
Website: http://www.porphyriafoundation.com
E-mail: porphyrus@aol.com
Verified: 9/17/2010

Canadian Association for Porphyria

International. Founded 1988. Dedicated to improving the quality of life for people affected by porphyria, a group of rare genetic disorders characterized by disturbances of porphyria metabolism. Offers programs of awareness, education, service, advocacy and support. Promotes awareness of porphyria through educational literature, articles, newsletters, information and referrals. Offers support groups, and assistance in starting groups. Encourages and supports research.
Write:
Canadian Association for Porphyria
P.O. Box 1206
Neepawa
Manitoba, Canada, R0J1H0
Voice: 204-476-2800
Fax: 204-476-2800
Website: http://www.cpf-inc.ca
Verified: 5/4/2010