FDA Letters From People with EPP


EPP friends and family members of EPP people please get your pen and paper out and write a letter to the FDA.  The reason is that we need to assure them that people with EPP are in grave need of a treatment.


Many health professionals and health departments have the opinion that a life style change is all that is needed for EPP.  In other words, stay out of the sun and the person with EPP will be fine.   People with EPP and their family members need to change their opinion, particularly since the FDA will be assessing a new treatment, Afamelanotide / SCENESSE for approval or not.   


Please take a few minutes of your time to write a letter to the FDA describing your experience with EPP, how it has negatively impacted your life and how much you need a treatment for the disease.  This letter will accomplish more than you can imagine.  All you need to do is write the letter addressed to


Margaret Hamburg, M.D.

Commissioner, Food and Drug Administration

10903 New Hampshire Ave

Silver Spring, MD 20993-0002


*BUT DO NOT MAIL IT TO THEM*.  Rather send it to the APF so we can deliver all the letters to them personally.  We also ask that if a few EPP patients who are willing to speak with them in person would like to attend the meeting, as well.  If you would like to participate, please contact Desiree at the APF office   1.866.APF. 3635


This is a simple but important task that will only take you minutes.   You have the opportunity to have a new treatment for EPP.  Our researchers have worked very hard to complete the research for FDA approval.  Please honor their work with your letter.  


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


Thank you,

Desiree Lyon Howe