Porphyria / Family Village Library

Porphyria

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Porphyria"

Who to Contact

American Porphyria Foundation (APF)
PO Box 22712
Houston, Texas, USA 77227
(713) 266-9617
E-mail: porphyrus@aol.com
Web: http://www.porphyriafoundation.com/

The American Porphyria Foundation has been established to enhance awareness and education about the Porphyrias and to aid in advancing treatment of this group of disorders. They will provide assistance to anyone wishing to start a local support group in their locality. The Foundation publishes a quarterly newsletter, Porphyria News, and offers a new parent packet, that includes a general brochure, questionnaire, and the newsletter. They have several brochures including, "Diet and Nutrition in Porphyria," "Acute Intermittent Porphyria," and "When the Sun Can't Shine." The foundation will provide referrals to prophyria specialists.

Where to Go to Chat with Others

Porphyria
This is a list for people with Porphyria. Friends, families and caregivers are welcome. It is a group for support and information exchange with a specific focus on education, research and the scientific aspects of Porphyria. It is not intended to provide medical advice. Each person should check with their physician before deciding if the information or advice on the list is suitable for their type of Porphyria.
Porph
Porph Group is for individuals seeking information on Porphyria. Our specific focus is on education, research and support.

Learn More About It

Porphyria Genetic Home Reference
Porphyria: A Patient's Guide
Porphyria
National Digestive Diseases Information Clearinghouse

Web Sites