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!"
Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...
Happy Thanksgiving everyone 2017
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...
4. The Pain Scale Is Useless to Us There’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces...