What’s in It for You?
All porphyria patients and their families can contribute to
medical knowledge of these diseases by volunteering for research.
Each of the five Porphyria Clinical Research Consortium
centers is recruiting patient volunteers with all types of
porphyria. Participation could include treatment trials, or simply
visiting a Consortium clinic.
I have been lucky enough to take part in two clinical studies
since my diagnosis with AIP in 1995. For me the most rewarding
part of each project was the one-on-one time spent
with a porphyria expert. As part of each study I was examined
by, and discussed my history with, a doctor who had
spent an entire career studying and treating the porphyrias.
From a purely selfish point of view, I found it comforting to receive
feedback on my experience with AIP, and advice about
future treatment, from physicians who have seen more than a
handful of cases. While I have always liked the doctors who
care for me at my local hospital, speaking with an expert
gave me added confidence that I am following the best
course of treatment for me.
There is also the greater good to be served by taking part in
a study. Patients who volunteer for clinical research can be
proud to know that they are adding to medical knowledge
about porphyria, making it possible for other patients to receive
better care. Understanding that porphyria is a family
disease makes this easy for anyone to relate to.
— Mira Geffner~Porphyria patient