American Porphyria Foundation (APF)
4900 Woodway, Suite 780
Houston, TX 77056-1837
Toll free: 866-APF-3635
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.