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), 4 of which can be fatal if left untreated during a crisis (often called "attacks"), the good news is: treatment exists!
We are here to share information, which can save and improve lives in patients with Porphyria. We are working to improve things to help both the patient and the Doctor. The Porphyria's exist in every race and culture.
We are a registered educational organization U.S. 501(c)3, and nothing in here constitutes medical advice, we share publicly available information from Porphyria researchers and Porphyria treatment centers around the world. Your generous donations are welcome, and are tax deductible.