This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
Friday, April 20, 2018
#PAW2018 PAW April 21-28 2018 Preview
#PAW2018 This year, each day we will bring you a member story of each type, a Medical Fact on each type, Medications approved by the FDA at this time, Research opportunities & how ALL PORPHYRIA members are spreading awareness!
Louise Schlosser BraunI'm speaking to the Emergency Room Department and to several Interns at UCI in Orange and Irvine California. I also have a huge burden this year to reach out to hospitals that are not providing the Pan Hematin treatments. I'm finding several patients experiencing this recently. If you have any particular hospitals that you're aware of, please let me know. I'm doing mailings for those out of state and plan to visit a few locally to spread AWARENESS this year!
Awareness Week will be held on April
21-28, 2018. We strive to dedicate this week to promote this group of rare
diseases, reduce the stigma associated with porphyria through physician
education, and provide support for those affected.
Awareness Week is the time for you to bring porphyria awareness to your local
communities. We, at the American Porphyria Foundation, encourage You to
help raise awareness and provide accurate information about porphyria where you
live. The APF will help you accomplish your own activity by providing:
·Porphyria Fact Sheets
·Information to gain media attention
·Porphyria Awareness week Graphics for Print, Web, and Social
media (See downloads below)
·Press releases for local newspapers and television and Much
Edrin at the APF office today to request information to be sent to you!