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)
4900 Woodway, Suite 780
Houston, TX 77056-1837
Toll free: 866-APF-3635
Telephone: 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.
• Porphgroup
  An on-line email list group which supports patients and family members of those suffering from, or who believe they have the genetic metabolic disease porphyria.
  
  

Learn More About It

• Porphyria Genetic Home Reference
• Porphyria: A Patient's Guide
• Porphyria
  National Digestive Diseases Information Clearinghouse
• Testing for Porphyria - Why laboratory tests are important for diagnosis of porphyrias
• Types of Porphyria
• A Guide to Diet & Porphyria
  From the Canadian Association for Porphyria

Web Sites

• The American Porphyria Foundation Web Site
• Canadian Porphyria Foundation
• Porphyria Associatio - Australia
• British Porphyria Association
• European Porphyria Initiative
• New Zealand Porphyria Support Group
• Porphyria South Africa

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Last Updated June 15, 2009 by familyvillage@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_porp.htm