Wednesday, March 12, 2014

News, Views and Upcoming Events

Patient Education Meeting in Hyatt Place, West Palm Beach, Florida 
The American Porphyria Foundation will be hosting a patient education meeting in West Palm Beach, FL on April 5, 2014 from 3:oo pm to 5:00 pm EDT.

Dr. Robert Desnick and other renowned porphyria experts will be presenting and answering your questions. The meeting is a wonderful opportunity to meet face to face with the experts and ask your questions. It is also a great moment to meet and join other patients. If you are interested in participating, please contact the APF 1.866.APF.3635 or email at You can also join a research project. To hear more about hot to get involved, please contact the APF.

Details of the meeting:
APF Patient Education Meeting
April 5, 2014  3:00pm-5:00pm
Hyatt Place West Palm Beach/Downtown - Trinity Room
295 Lakeview Ave, West Palm Beach, FL 33401.
Seating is limited.

New APF Video Is Coming Soon
We are glad to announce that last week the APF has produced a short video on porphyria. Dr. Lisa Kehrberg, a physician and an AIP patient, shared her personal experience dealing with the disease. Dr. Kehrberg discusses a classic porphyria attack along with pain and other symptoms. She further covers the importance of glucose and Panhematin as treatment options. The video will be available soon. Watch the APF news for updates!

Dear Subscribers, we have to correct a statement about PBG testing that we sent out last week in the e-news. Porphobilinogen (PBG) is not a porphyrin, but rather a precursor of porphyrins in your body. Normally, porphyrins are incorporated (or built) into heme, also an important part of hemoglobin. If this process is interrupted, PBG can build up in your body.

"Remember....Research is the key to your cure!"

No comments:

Post a Comment


SUPPORT OUR VERY OWN SPARTAN! Watch out, Boise Spartan Race, here comes Jared Ulmer! A self-described family man and health e...