If you live in Florida and are having difficulty getting treatment for porphyria, please call the APF and ask to speak with Desiree. If you like, please have on hand your doctor's name or the hospital or clinic where you are being treated.
The APF has contacted Patient Affairs Departments of specific hospitals on behalf of porphyria patients and apprised them of information about the disease, its diagnosis and treatments.
Next, if you are a PCT patient and are taking the drug, plaquenil, the APF has a member who would like to talk to you. Please contact the APF.
Remember.....Research is the key to your cure!