Welcome to the American Porphyria Foundation

Features

About Porphyria—Educational information for patients and family

Types of Porphyria—Get an overview on the different types of porphyra

Testing—Learn about lab tests and find specialists

For Physicians—Educational information for doctors

Panhematin^®(hemin for injection)— Read important treatment information

See Also:

• Newsletter
• Join
• About Us

• Contact
• Links
• Patient Stories

The APF is dedicated to improving the health and well-being of individuals and families affected by porphyria. Our mission is to:

Enhance public awareness about porphyria
Develop educational programs and distributing educational material for patients and physicians
Support research to improve treatment and ultimately lead to a cure

The APF also serves as an advocate on your behalf to other public, private, and government agencies interested in funding research and educational programs.

If you are a current member, please update your contact information.

Join Today and Receive a Complimentary Book

New members who register on or after September 1, 2004 will receive their own copy of Porphyria, A Lyon's Share of Trouble (a $20 value), by Desiree Lyon Howe, the APF Executive Director.

Current members registered with the APF before 9/1/04 can receive a copy of the book for $20.00 through the APF (just call us at 713-266-9617 to order).

This incredible book discusses Desiree's personal accounts of living with porphyria as well as stories of many other patients whom she has helped over the past twenty-five years.

Join today and receive the book at no extra charge!

Download Disease Management Document
This document includes essential information about porphyria, types, testing, and treatment with Panhematin^® (hemin for injection). You need the free Acrobat Reader to read this pdf. If you don't have Acrobat Reader, download it here.

Updates and Additions

APF Newsletter—Keep up to date with the Fall '04 issue of the APF newsletter (10/20/04)

Patient Stories—Read inspirational testimonials from real patients (8/24/04)

Drug lists—Make sure you know what's considered safe and unsafe (6/1/04)

Advisory Board
Our Advisory Board is made up of the world's foremost experts in porphyria management, diagnosis, and research. They have written or approved the medical information on this wesite.

The information contained on the American Porphyria Foundation (APF) web site or in the APF newsletter is provided for your general information only. The APF does not give medical advice or engage in the practice of medicine. The APF under no circumstances recommends particular treatments for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment. All information and content on this web site are protected by copyright. All rights are reserved. Users are prohibited from modifying, copying, distributing, transmitting, displaying, publishing, selling, licensing, creating derivative works, or using any information available on or through the site for commercial or public purposes.

Join the APF—Your donations help support patient and physician education as well as porphyria research. Learn more...