Thursday, November 19, 2015



 The APF and our FDA Committee will be leading a FULL SPEED AHEAD charge to gain FDA accelerated approval of Afamelanotide/SCENESSE, the new treatment for EPP. 

This treatment was so revolutionary that some of our friends are flying to Switzerland for the treatment.  This is outrageous that our own citizens are not being given a treatment that is available to half of the world.  Instead, we must raise funds to travel to Europe for this treatment .   It is time for us to act.

The APF cannot do this without YOU, but we firmly believe with your help we will see FDA approval.  YOU will be hearing from committee members about what each of YOU can do.  

Many of YOU have sent letters to the FDA via the APF and we thank you heartily for those letters.  However, we need many, many more letters describing your personal experience and need for a treatment.   Those who were fortunate to have received the real treatment during the clinical trials should include your experience in your letter. 

YOU can also contact your legislators or better yet, the APF will address a letter to your Congressman to include with your personal letter.

We are now working full speed ahead.   Watch for the APF Advocacy committee members to answer your questions and encourage you to write your letters and contact your congressmen. 
Send your letters to:
 American Porphyria Foundation
4900 Wooodway Dr., Suite 780
Houston , TX 77056
Address your letters to
Kendall Marcus, M.D.
Food and Drug Administration
Center for Drug Evaluation and Research
Division of Dermatology and Dental Products
White Oak Campus, WO 22/Rm. 5202 
1903 New Hampshire Ave. 
Silver Spring, MD 20993

Thank you Friends, 
Desiree and APF staff.

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