United Porphyrias Association

The porphyrias are a group of rare, genetic disorders. People living with porphyria have changes to certain genes, called mutations, which affect their body’s ability to regulate itself.

In the porphyrias, these mutations are in the genes involved in a certain chemical pathway, called the heme biosynthetic pathway. Heme is a compound that the body needs to make hemoglobin and there are several steps to make this compound in the body. Each type of porphyria is caused by a defect in a specific enzyme in the heme biosynthetic pathway.

Mission:
The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias.

Vision:
A world where patients are free from the pain and challenges of porphyria.