Friday, April 20, 2018

#PAW2018 PAW April 21-28 2018 Preview


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 Braun I'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!

Porphyria 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.
Porphyria 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 Brochures
·       Porphyria Fact Sheets
·       PorphyriaLive DVDs
·       Information to gain media attention
·       PowerPoint presentations,
·       Porphyria Awareness week Graphics for Print, Web, and Social media (See downloads below)
·       Press releases for local newspapers and television and Much More!
Contact Edrin at the APF office today to request information to be sent to you!
1.866.APF.3635 or email:

U.S.: Porphyria Awareness Week complete package Includes (each packet can also be downloaded individually)
·       Print Packet
·       Web Packet
·       Email Signatures
·       Complete Package

International Porphyria Awareness Week Complete package includes (each packet can also be downloaded individually):
·       Print Packet
·       Web Packet
·       Email Signatures
·       Complete Package
Fb Photo and Video Frame : Spread the Word!

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