Self Help Clearinghouse

Porphyria

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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 and advocacy. Encourages and supports research. Assistance in starting groups.
Write:
Canadian Porphyria Fdn., 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: 4/27/2007

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 Fdn.
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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The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.

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