Exciting news : Over the next six months, renowned porphyria specialist, Dr Karl Anderson, will be traveling around the country to register patients for the Registry research projects and the Longitudinal Study right in your own home town.
Here is what we need you to do, if you have not joined the The APF, please do so immediately. It does not cost anything to join although donations are always appreciated. We need a means to locate where people with porphyria are living. For example, we know there are patients in the middle of Florida and Southern Florida so we want to set up for a few days there. Without your names and type of porphyria we will not know where is best to place Dr Anderson's traveling. Research unit .
All porphyrias are needed, so please join ASAP. We will begin mapping the cities to visit next week.
Remember your FDA letters. We will be taking them to DC in early May. Read more.... http://www.porphyriafoundation.com/news/FDA-Letters-from-EPP-Patients
"Remember....Research is the key to your cure!"