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PORPHYRIA POST

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 porphyrus@porphyriafoundation.org
RSVP TODAY
Patient Education and Support Meeting - Orlando
LOCATION
Hilton Garden Inn, Poseidon/Neptune Room, Orlando at SeaWorld 6850 Westwood Blvd, Orlando, FL 32821
DATE AND TIME
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!
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I can't make it
Patient Education and Support Meeting - Boston
LOCATION
Boston Marriott Copley Place
DATE AND TIME
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!
Maybe
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 porphyrus@porphyriafoundation.com
American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org
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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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Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…