About Porphyria
A group of 8 rare disorders related to how your body makes an important molecule called heme.
While different types of porphyria have very different symptoms, from extremely painful sensitivity to visible light to severe abdominal pain, we have many challenges in common.
global advocacy priorities
Knowledgeable health professionals
Timely Diagnosis
Effective treatments and appropriate care
Accurate information statement
The global porphyria community is aware of potentially dangerous information being circulated across social media platforms and on various websites regarding the diagnosis, management, and treatment of the porphyrias. Unfortunately, some of the information is inaccurate, misquoted or taken out of context. Such information could be medically dangerous if taken as advice or guidance without input from a porphyria expert or qualified healthcare professional.
If you have concerns about your care, testing or general porphyria management, please connect with a recognized porphyria specialist/expert centre or your national porphyria patient organization. These organizations will be best equipped to guide you toward appropriate testing and safe management/treatment for your porphyria.