Monday, June 8, 2015
Longitudinal Study of the Porphyrias
We are looking for patients volunteers for the 7201 Longitudinal Study of the Porphyrias. Participants of this study DON'T have to travel to the research site. All that needed is to answer porphyria-related questionnaire over the phone. You will be working closely with porphyria experts and researchers.
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.
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.
In order to participate in a study, please contact us at the APF 866-apf-3635.
"Remember....Research is the key to your cure!"
2018 I bet you never thought you would hear me say I am grateful for my rare diseases. Heck, I never thought I wo...
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...
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...