Porphyria
Self Help Clearinghouse
Canadian Porphyria Foundation, Inc.
National. 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 awarenesss of porphyria through educational literature,
articles, newsletters, information and referrals. Offers support
groups, advocacy and assistance in starting groups. Encourages and
supports research.
Write:
Canadian Porphyria Foundation, Inc.
P.O. Box 1206, Neepawa
Manitoba, Canada R0J 1H0
Voice: 1-866-476-2801 or 204-476-2800
Fax: 204-476-2800
Website: http://www.cpf-inc.ca
E-mail: porphyria@cpf-inc.ca
Verified: 12/20/2007
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
Fax: 713-840-9552
Website: http://www.porphyriafoundation.com
E-mail: porphyrus@aol.com
Verified: 11/2/2007
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