Big News: EPP, Advisory Committee, New EPP Publication

THE FUTURE OF THE EPP PHOTO CAMPAIGN​

The APF received many photos and letters from you and your beautiful children! The images are incredibly powerful in showing the impact of EPP on our youngest members. A package was delivered to the FDA along with our strong and consistent message to APPROVE SCENESSE! Afamelanotide 16mg (Scenesse) has shown in all clinical trials to be a safe and effective treatment for adult patients with EPP.

The American Porphyria Foundation is committed to representing our patient community to the FDA. Stay tuned for more ways that YOU can be involved in furthering this effort. Alone we are a whisper, together we can ROAR!

As always, please contact the APF office on 1-866-APF-3635 at any time. We love to hear from you!

 

CALLING ART GALLERY OWNERS....

If you own an art gallery or have a contact with one, please call Edrin at the APF office on 866-APF-3635 or by email at edrinw@porphyriafoundation.org.

 

PATIENT ADVISORY COMMITTEE

Every year the APF selects members to join our Patient Advisory Committee.  This important committee gives patients the opportunity to be more deeply involved with APF programs pertinent to the issues in front of the porphyria community. The committee will represent members with each type of porphyria. 

If you are interested in joining, please contact Edrin at the APF office on 866.APF.3635.

 

NEWLY PUBLISHED RESEARCH STUDY ON EPP & XLP

Please click on the link below to review a recent observation study titled" Clinical, Biochemical, and Genetic Characterization of North American Patients With Erythropoietic Protoporphyria and X-linked Protoporphyria", which was printed in Jama Dermatology on June 14, 2017.

The objective of this study was to describe the baseline clinical characteristics, genotypes, and determinants of disease severity in a large patient cohort with EPP or XLP. 

Link: https://www.ncbi.nlm.nih.gov/pubmed/28614581

 

"Remember....Research is the key to your cure!"