Tuesday, March 19, 2013

Attention ALL EPP Patients, Family & Friends

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

Many health professionals and health departments have the opinion that a life style change is all that is needed for people to handle EPP.  In other words, some think that all you need to do is stay out of the sun, and you will be fine.  People with EPP and their family members need to enlighten them that this is not true by presenting facts about your lives and the lives of your loved ones.  We especially need to get this message across to FDA reviewers who will be assessing a new treatment, Afamelanotide / SCENESSE for approval.

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 your family and how much you need a treatment for the disease.  It would be helpful if those of you who were in the Phase II and Phase III trials and received the "real drug" share how the treatment changed your life in a positive way.   Those who received the placebo can explain how much you desire effective treatment. 

Your letters will accomplish far more than you can imagine.  All you need to do is write the letter and address it 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 that we can deliver all the letters to the FDA personally.  We also ask if a few EPP patients who live in the DC area and  are willing to speak with them in person would like to attend the meeting, as well.  If you are willing 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

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