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Porphyria Post
Have You Joined Our Open & Closed Facebook Groups? Porphyria Research Group?
Have you checked out the APF Facebook groups recently? Did you know APF has seven Facebook groups? We moderate one public group along with six private disease-specific groups that you can request to join. The communities are very active and it is a great way to connect with other porphyria patients and caregivers. In addition, the APF regularly posts publications, research, updates and other educational information As an ultra-rare condition it can seem like you are alone but YOU ARE NOT! ….come join us!
Below are the Official 7 APF Facebook Groups
Public Group
Porphyria - American Porphyria Foundation
Private Groups
APF: Porphyria - AIP, HCP, VP
APF: Porphyria - PCT
APF: Porphyria - EPP
APF: Porphria - CEP
Porphyria International Support & Education Group
Porphyria Research
SCENESSE® In Australia
The Australian Therapeutic Goods Administration (TGA) has enabled Priority Registration Pathway for SCENESSE® for the treatment of Erythropoietic Protoporphyria (EPP). This review pathway gives a target time frame of 150 working days from submission of the a new drug application.
The APF congratulates the Australian EPP community on this progress! SCENESSE® was approved by the US Food and Drug Administration on October 8, 2019. Distribution and reimbursement arrangements are in preparation.
Need Something from the APF???
We’re Here for You!
Call us on 866-APF-3635
Click this link to email us at
Patient Education and Support Meeting - Orlando
Hilton Garden Inn, Poseidon/Neptune Room, Orlando at SeaWorld 6850 Westwood Blvd, Orlando, FL 32821
12/08/19 6:30pm - 12/08/19 8:30pm
The American Porphyria Foundation will be hosting a Patient Education and Support Meeting in Orlando, FL on Sunday, December 8. RSVP TODAY!
I'll be there!
I can't make it
Patient Education and Support Meeting - Boston
Boston Marriott Copley Place
11/10/19 5:00pm - 11/10/19 7:00pm
The American Porphyria Foundation will be hosting a Patient Education and Support Meeting in Boston, MA on Sunday, November 10. RSVP TODAY!
I'll be there!
I can't make it
Interested in a Patient Education and Support Meeting?
If you are interested in the possibility of having an APF hosted Patient Education and Support Meeting in your area, please contact the APF: 866-273-3635
Get Involved
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Contact Information
Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to
American Porphyria Foundation| 1.866.APF.3635 |
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"Remember....Research is the Key to Your Cure!"
The American Porphyria Foundation
4915 St. Elmo Ave., Suite 200
Bethesda, MD 20814


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