Variegate Porphyria (VP)
"I recently travelled to UAB Birmingham to enroll in the Alnylam clinical trial. I had just spent 18 days in the hospital due to a severe attack and wasn't sure I was up to the trip. Despite still battling various symptoms, I am glad I made the trip and enrolled in the clinical trial. The APF staff was very helpful in coordinating my visit. The UAB Birmingham staff was very friendly and professional. Dr. Bloomer was great; he spent close to two hours with me and my family discussing Porphyria, answering our questions, and discussing the various research projects and clinical trials. I left feeling like I had additional allies and advocates to lean on to help me manage this horrible disease.
I would encourage anyone who qualifies to please enroll in the clinical trial. Several people have posted that flying, with all of the lines and waiting, would be too difficult for them. I literally understand how you feel! I utilized the wheelchair services which eliminated the long security lines and also the long lines to get on the airplane. There was no extra cost, just an appropriate tip to the staff member who assisted me."
~ Sharon Dill, AIP