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Showing posts from November, 2015


November 25, 2015
Dear EPP Family,
We are a volunteer team, working with the APF to secure your EPP patient experiences in letter-form so that we can take them collectively to the FDA to ask them for the accelerated approval of the drug Afamelanotide.
Your contributions to previous letter campaigns worked.  They convinced the FDA to approve Phase III of the drug trials in the USA, and our American letters helped convince the European Medicines Agency to grant approval of the drug in the European Union.  Now it is our turn to seek approval for Afamelanotide by the FDA in the USA!
Our goal is twofold:  (1) to collect more than 300 letters from patients, family and friends by December 15, 2015 and (2) for all of us to reach out to our US Congress Representatives to ask for their help. 
Enclosed please find an overview of the letter writing campaign with tips and instructions (who, what, why, where and when).  In addition, there is a US Congressional Caucus called the Rare Disease Legislative …

Public Service Announcement American Porphyria Foundation

We hope that you will enjoy this wonderful day with good health in mind.  We thank you for all of your support and will continue to bring you new research and information about EPP Drug approval and Acute Porphyria Studies starting soon.  If you have any questions please feel free to contact the APF 1-866-APF-3635.  We thank you again for your continued support.  Stay Happy & Well.

                                                           APF Staff & Volunteers

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

Shadow Race in Vernon, TX was a success!

Shadow Race in Vernon, TX was a success! The Cook Family: "Thank you to all of the sponsors for the 1st Annual Shadow Race in Vernon, Texas!  We cannot thank you enough for the support in raising awareness for Porphyria.  In our 1st annual race we were able to collect monetary donations, totaling $5000 for the "added money".  Also donated were items such as custom made buckles, custom made spur straps, Total Equine Feed, head stalls, hay bags, rope halters, and other horse maintenance supplies.   Pizza, candy, homemade cinnamon rolls, and drinks were donated for the concession stand and t-shirts were sold.  In all we were able to donate $4000 to the American Porphyria Foundation and pay out $11,600 to the winners!  A huge thank you to all that supported and or donated!  We look forward to the 2nd Annual Shadow Race in 2016 and hope you will consider giving again!"
Cason and Caul, brothers with EPP.

From NCBI CYP2D6 Polymorphisms in Patients with Porphyria PCT Type

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