We extend a warm welcome to you and thank you for checking out the Porphyria Alliance website.
We are dedicated to better testing, treatment, awareness, and research in the Porphyria's. Several newer tests have already been created and just need to be made available to the public to reduce the average and unacceptable time of 15! years to a diagnosis in the acute porphyria's.
Our mission is to raise awareness about the porphyria's, a group of diseases (one porphyria was discovered only a few years ago), four of which can be fatal if left untreated during a crisis (often called "attacks"), the good news is: treatment exists!
We are a registered educational organization U.S. 501(c)3 and nothing here constitutes medical advice, we share publicly available information from porphyria researchers ad porphyria treatment centers around the world. Your generous donations are welcome and are tax deductible.