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Our mission is to improve the health and well-being of all individuals and families impacted by Porphyria. We have maintained a relentless focus on education, advocacy, support services and research for the prevention, treatment and cure of the Porphyrias.
Porphyria is not a single disease but a group of eight inherited genetic disorders that differ considerably from each other. A common feature in all Porphyrias is the accumulation in the body of porphyrins and porphyrin precursors. Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends on the type of Porphyria.
Congenital Erythropoietic Porphyria
"The American Porphyria Foundation helped me in find an exact diagnosis of my disease. By interacting with other APF members, I developed friendships with many people living with different skin conditions around the world and I am no more feeling alone."
Acute Intermittent Porphyria
"The American Porphyria Foundation empowered me to understand everything about my illness. Just knowing there were others like me in the APF community that had regained their health, gave me hope that no matter how bad it got, one day I could be healthy again."
X-Linked Protoporphyria
"APF is not only a support system for me, but also for my family. Being able to communicate with other members makes you feel less alone and even though most of us have never met face to face, it is like we have all been friends for years."
Acute Intermittent Porphyria
"Tracy is a beautiful, brave and caring person in every way. She introduced me to AIP on our first date. She wasn't afraid to tell me. She wanted me to accept her from the start. But she also wanted to meet someone who wouldn't feel that this disease defined who she is. I am thankful for her to be in my life. And I am thankful that she has the APF in hers.?."
Acute Intermittent Porphyria
"The APF has been instrumental in finding a support system for the proper management of my AIP, and finding fellow sufferers of this challenging condition. In any chronic illness, it's integral to find like-minded communities and the APF is certainly a beacon of light at the end of a dark tunnel for me."
Acute Intermittent Porphyria
"The APF has helped me; my family and my doctor navigate through the complexities of proper diagnosis and treatment here in the US and abroad. Thank you APF."
"The APF has enabled our family and physicians to keep updated on porphyria diagnosis, treatment and the latest research."
Acute Intermittent Porphyria
"The American Porphyria Foundation has been my support group, my fountain of knowledge, my rock!"
Congenital Erythropoietic Porphyria
"The APF has been our beacon in the ocean. It is our foundation of knowledge and support that has been helping us to better understand the CEP. The APF connects our family with the other members, so we don't feel alone fighting the disease. I hope the APF's research attempts and clinical trials will help facilitate in finding a cure one day."
Variegate Porphyria
"The APF has provided me with a ton of resources that have allowed me to confidently travel around the world. It has given my family and me access to information and a community for support."
Acute Intermittent Porphyria
"Despite it all I have a positive attitude due to my amazing family, friends and support team. Everyone that I have met through Facebook, the APF, and re groups have been there for us and we are grateful."
Erythropoietic Protoporphyria
"EPP has always made me feel alone. I've never known anyone else to have it. But with the APF, I find myself understanding what the people in the articles feel. I actually can relate to their pain. I'm no longer alone."
Acute Intermittent Porphyria
"The American Porphyria Foundation has been a constant resource of knowledge, support and care, that I couldn't live without!"
Erythropoietic Protoporphyria
"The APF has provided those with Porphyria, such as myself, with not only an answer to an invisible pain but also a strong support system so that we'll never feel alone in the dark."
