This blog is dedicated to all the Porphyria patients worldwide. The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
If you have attacks of Acute Porphyria you may be familiar with the Drug Panhematin.
It is the first Orphan drug & has helped many around the world.
Porphyria is a family of rare, genetic diseases characterized by potentially life-threatening attacks and, for some patients, chronic debilitating symptoms that negatively impact daily functioning and quality of life.
Some Americans could lose Social Security Disability Insurance benefits under a recent Trump administration proposal -- a change that could affect thousands of people but that has received little attention since it was first floated in November.
Are you ready to face new challenges with your Porphyria? Need assistance in learning and understanding what to say to your treating physician. No matter where you live be prepared.
I'm 18 years old and have experienced pain after staying in the sun since I was about 2 years old. When I was 2, I was outside and all of the sudden I started crying. Nobody knew why and my parents asked themselves whether or not I was pretending.
