EPP Patients Needed For Research!

Doctors are building a national Porphyria Patient Registry, and work with erythropoietic protoporphyria (EPP) patients is starting now. You can volunteer to become part of the registry. This will put you in contact with porphyria experts and help them answer questions all patients and family members have about your type of porphyria.

To volunteer for clinical research, contact the APF so the Porphyria Clinical Research Consortium doctors can contact you! There are five porphyria centers of excellence all participating in research so far: Mount Sinai Medical Center (NYC), University of Alabama (Birmingham), University of Texas Medical Branch (Galveston), University of Utah (Salt Lake City) and University of California San Francisco. More study sites will be added as funding becomes available.

Consortium coordinator Dana Doheny stressed that the best way to be included in the registry is to contact the APF so we can put you in contact with the consortium doctors. So please, if you want to be included in clinical research or in the EPP registry, contact the APF so the study centers can contact you!

The Consortium will eventually conduct research in all of the porphyrias and all five centers are recruiting patients now, so even if you don't have EPP, please get in touch.

And here's to your good health!