History of the APF

Desiree Lyon

The American Porphyria Foundation was formed in 1982 when APF Executive Director, Desiree Lyon,  met  APF President, James Young.  Desiree suffered from AIP as did James's wife Susie. Both James and Desiree believed that a patient-run, expert-advised porphyria advocacy organization was needed.  They envisioned an organization that put PATIENTS FIRST and would educate patients, doctors and the general public about Porphyria, raise funds for research, and advocate for better policy and patient care.   

At the time, Desiree was a very sick young woman undergoing treatment as an inpatient at the National Institutes of Health (NIH) in Bethesda, MD. The physician-scientists treating her had explained that Acute Intermittent Porphyria (AIP) was causing the horrible pain she felt, along with the seizures and other neurological disturbances, immense swelling and rigidity of her abdomen, and other alarming and life-threatening symptoms.  Hematin/Panhematin had saved her life.  

Meanwhile in Chicago, Susie was enduring a similar situation and was being treated by a different expert with life saving Hematin/Panhematin.  James was her constant caretaker and became very knowledgeable about the disease and its treatment.  As so many of us do when we are first diagnosed with Porphyria, Desiree also sought more information about her condition.  It was very difficult to find materials written in language she or any other person without a medical degree could understand.   

To try to understand AIP. she asked her doctors if she could walk herself and her IV pole down to the hospital’s medical library to read the medical journals.  Then she asked if she could join the doctors in the laboratory.  Although she was allowed to watch the research only  a few times, show her that treatment would be enhanced in that laboratory .  

Fortunately, in 1982, through the efforts of Susie's porphyria expert,  Dr. Claus Pierach, James and Desiree met. Both agreed that THE AMERICAN PORPHYRIA FOUNDATION would be not just a point of discussion but a real foundation to help patients across the country.  James would handle all the finances and Desiree would take care of the patients and the administration of the APF.   

The APF was born the day James and Desiree met and they were the only two members!!!.  The APF office was Desiree's kitchen table and headquarters was  James's office in Chicago with his mother as Secretary.  Today the APF has 17,2000 members in over 100 countries with 5,500 treating physicians and an esteemed Scientific Advisory Board.  

One of the APF’s earliest efforts was joining with other rare disease advocates to form the National Organization for Rare Disorders (NORD), and testifying before Congress in the same year in support of the FDA approval of the 1983 Orphan Drug Act (ODA).    Desiree was not only one of the pioneers of the ODA, she also  spearheaded the FDA approval for Panhematin® , the treatment for acute Porphyria , to be available in the United States and to be adopted as the first drug to be approved under the ODA.  

Since then, we have published materials on all the Porphyrias for a patient audience; developed a comprehensive website and the educational DVD Porphyria Live; educated doctors at medical conferences, and through mailings and in-hospital seminars; helped thousands of Porphyria patients in the U.S. and internationally find their way to diagnosis and treatment; served as liaison between the patient/primary care and research communities; and continually sought funds to improve research and training, diagnosis and care for the Porphyrias.