Join the Registry

Porphyria experts are creating a National Porphyria Registry. Would you like to participate? The Registry will give doctors a chance to contact people with porphyria who may want to participate in future clinical research. It will also help determine the incidence of porphyria—vital to attracting funding and institutional support for improving porphyria treatment.

A registry is a type of partnership between doctors and patients—a way for those with porphyria to share information about their health and treatment so physicians can learn from their experience and use that knowledge to enhance care. Because porphyria is rare, it can be hard for doctors to make fast and firm predictions about how the disease will act in a given patient, or how a treatment will affect an individual.

Doctors who study rare diseases see a relatively small number of sufferers over many years of practice. This Registry will give a big boost to medical and scientific understanding of porphyria by bringing together information from patients all over the country. The APF is supporting the doctors' work to build a National Porphyria Registry. You can help by calling our office toll free at 1-866-APF-3635.