Longitudinal Study of the PorphyriasWe are looking for patients volunteers for the 7201 Longitudinal Study of the Porphyrias. The purpose of this long-term follow-up study is to provide a better understanding of the natural history of porphyrias, as affected by available therapies, and to aid in developing new forms of treatment. You will be working closely with porphyria experts and researchers.Volunteering for research is the most important action you can take to change your future health because Research is the Key to Your Cure. You can be a Medical Hero and join many patients, who gave some of their time to help find important answers leading to new and improved treatments and a cure.To find out more information and participate in a study, please contact us at the APF 866-apf-3635 to be put in touch with the study center closest to you.
"Remember....Research is the key to your cure!"
Monday, September 14, 2015
We need you! Longitudinal Study of the Porphyrias
#PAW2018 This is one of the hereditary hepatic porphyrias. Its inheritance is autosomal dominant. The deficient enzyme is porphobilinog...
Happy Thanksgiving everyone 2017
What is Rare Disease Day? TAKE A LOOK AT THE EVENTS HAPPENING AROUND THE WORLD FOR RARE DISEASE DAY! Find out how yo...
#PAW2018 This year, each day we will bring you a member story of each type, a Medical Fact on each type, Medications approved ...