Join the Registry

Porphyria experts are creating a National Porphyria Registry—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. A patient registry can help doctors learn more about the porphyrias, and helps them to help patients.

A new Contact Registry for the Porphyria Clinical Research Consortium is now up and running. The contact registry is a way for patients to be contacted about clinical research opportunities and progress. It is anonymous and free of charge. All data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.

The registry is not linked to APF membership, but we hope you will join the American Porphyria Foundation too! Our diseases are rare, so we need to speak up and represent our own concerns. The APF has played an active and ongoing part in establishing and supporting the porphyria Consortium, and supports porphyria patients and families through education, awareness and advocacy in hospitals, funding agencies and the media.

The National Institutes of Health recognized the importance of the patient advocacy groups in making us a part of the Clinical Research Consortium. With patients spread out all over the country it is important that we have an advocacy group to link us together. So please consider joining the Contact Registry, and thank you for continuing to be a member of the APF.

How to Join the Contact Registry

To join the Contact Registry, click here to open a page that lists all of the rare disease consortia. Scroll down the page until you come to the Porphyria Consortium and click on your type of porphyria. You will then be asked to complete a simple form including information about the date of your diagnosis, if you know it. If you have copies of your initial diagnostic lab results, you may want to have them handy when you go to the registry website.

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.

You can help by enrolling in the Contact Registry directly or by calling our office toll free at 1-866-APF-3635.