Tuesday, January 17, 2012


This year the American Porphyria Foundation for 2012 is focusing on supporting the Physician Education Program.  We have many fine Specialty Doctors that are approaching Retirement.  We appreciate all of their hard work and time that they have devoted to their patients and the APF.  But when they retire who will replace them?  How will they be trained properly?  Many wonder will we have support having such a rare disease.  Will we have a cure for all types of Porphyria?
These questions are so important to each one of us.  That is why we as the patients need to come together to support the new Doctors and the American Porphyria Foundation.  How can we do this you may ask?
One way is by talking to your Doctor to raise awareness of the disease that you have.  What problems you face and how you need a willing Doctor to take the time to listen to you and help you.
Secondly, tell your family and friends that you need their support to learn this disease and even show them they may have this disease to and maybe they need to be tested.
Another way is by supporting the American Porphyria Foundation with your yearly contributions to continue all the hard work that the APF does for us and Doctors.  Do you know what some of the things are that they do for us?  They make many phone calls, get Dr. Packets together, ER Kits out, take so many phone calls from us daily, coordinate meetings with Doctors, hold events all over the US.  They help other Porphyria Foundations all around the world, they print brochures, paperwork, Disability and so much more we don’t even see.
You can contribute in a financial way also.  We know times are tough for all people and families.  Costs are rising in all directions, but if you can think and then act we can get these new Doctors rolling to help us.  Take a minute to call the American Porphyria Foundation tell them your personal story about Porphyria and how you can contribute to the Physician Education Program.

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