Patient Education Meeting in Boston is coming up!
As you know, American Association for the Study of Liver Diseases (AASLD) will host their annual meeting in Boston Nov 7-11, 2014 at the Hynes Convention Center. We invite you to participate in a patient education meeting. The meeting will be held at the Carrie Hall at the Brigham and Women's Hospital on November 9 from 3 to 6 pm.This meeting provides an excellent opportunity for you to speak to the experts and to meet fellow-patients. Please let us know if you would like to participate.
We also are looking for volunteers to help man the booth! You will be meeting with the physician attendees, handing out educational literature, and sharing your porphyria experience with the doctors who come to the APF exhibit booth.
If you live in the Boston area and are willing to assist us by manning the exhibit booth, please contact the APF: 713.857.0995 or email us atnatalia@porphyriafoundation.
#PorphyriaPieChallengePlease join us in our our fun way to increase porphyria awareness! We are doing a porphyria pie challenge with a goal to increase porphyria awareness and raise funds for porphyria research.Watch the videos of our members:Use #porphyriapiechallenge hashtag to your post will help it circulate through Facebook and Twitter better and gain the awareness level to make a difference.
"Remember.....Research is the key to your cure!"
Wednesday, October 8, 2014
Patient Education Meeting in Boston is coming up! & Porphyria Pie Challenge
Learn about each gene- aminolevulinate dehydratase The ALAD gene provides instructions for making an enzyme known as delta-aminole...
Erythropoietic Protoporphyria What is erythropoietic protoporphyria? The word ‘erythropoietic’ means associated with red blood cells (‘...
#PAW2018 This year, each day we will bring you a member story of each type, a Medical Fact on each type, Medications approved ...
Happy Thanksgiving everyone 2017