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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 Advocates (RDLA).  You can ask your Congress Member to join.  Simple instructions and an online link are also enclosed.  It takes less than 5 minutes to complete the request online!

If you have any questions, please reach out to us or to the APF.  Let's make this happen.  Patient advocacy works. THANK YOU FOR PARTICIPATING!


Rebecca Griffiths:
George Hodder:
Victor Mejias:
Pierre Mouledoux:
Martha Peterson:
Gayle von Seggern:

NOVEMBER 25, 2015

·         You (Erythropoietic Protoporphyria patients), your family and your friends
·         Please note that this is a patient-driven letter writing campaign as we are acting independently of the drug company

·         We need to collect as many patient EPP experiences as possible addressed to the Director at the Center for Drug Evaluation and Research at the FDA's Division of Dermatology
(See enclosed letter template)
·         You may also wish to send a copy of your letter to your US Congress Representative and Senators in Washington DC.  Please look them up through this link and add their names to the cc list at the end of your letter.  We will ensure a copy is sent to them.
·         Once we collect all your letters, the APF will deliver the full stack of letters, in person, to the FDA and ask for the accelerated approval for Afamelanotide
(This meeting is likely to happen in January 2016)
·         We ask that each patient with EPP commit to providing at least 3 letters (from yourself and at least 2 others; of course, more than 3 letters is most welcome)
·         Parents of EPP children, we especially encourage the children to participate and write letters

Tips for Patient Letters:
o    Please ask for the FDA to accelerate the approval for Afamelanotide
o    Please focus your letters on 4 topics that we know the FDA is keen to understand the most.  These are topics that only, us patients, can tell:  How EPP affects your ability (1) to attend school and/or (2) work and/or (3) complete everyday tasks as well as  (4) your experience during the drug trials, if applicable
o    Although EPP skin reactions are not always visible, if you have photos that demonstrate swelling, scarring, scabbing etc., please include them with your letters
Tips for Friends and Family Letters:  
o    Please ask for the FDA to accelerate the approval for Afamelanotide
o    Please focus your letters on your observations of how EPP affects your friend or family member, how hard it is for him/her (the EPP patient) and even how it effects him/her as well as how it affects you and/or your family
·         Patient advocacy works
·         We believe that our advocacy is critical to ensure approval of the drug
·         Independent of the drug company, it is important that we demonstrate why we need this drug

·         Do NOT send your letters directly to the FDA
(1)    The American Porphyria Foundation, 4900 Woodway, Suite 780, Houston, TX 77056
(2)    OR Email:
·         Send a signed hard copy by mail to the APF OR scan your signed letter and email it electronically to the APF

·         Please provide letters to the APF by December 15, 2015

* * * * *

Letter Template

[Insert Date]

Kendall Marcus, M.D.
Director, Division of Dermatology and Dental Products
Center for Drug Evaluation and Research
Food and Drug Administration
White Oak Campus, WO 22/Rm. 5202
10903 New Hampshire Avenue
Silver Spring, MD 20993

Dear Dr. Marcus:

[Insert your letter here]


[Your signature here]
[Insert your name here]
Age, [insert] years old
[Insert your address here:
# Street
Town, State  Zip Code]

[EPP patients, please cc your one US Congress Representative and your two US Senators, e.g.:

cc: The Honorable Cory Booker (D-NJ, United States Senate), The Honorable Bob Menendez (D-NJ, United States Senate), The Honorable Rodney Frelinghuysen (R-NJ, 11th District, United States Congress)]


An excerpt from the RDLA's website:

Rare Disease Legislative Advocates (RDLA) is a collaborative organization designed to support the advocacy of all rare disease groups. Our goal is to empower the patient to become an advocate! By growing the patient advocacy community & working collectively we can amplify our many voices to ensure rare disease patients are heard in State & Federal Government.

As an advocate for patients with rare diseases you are a very important part of the legislative process. You can make the difference as you are the voices your legislators and congressmen want, or in some cases do not want to hear. Please complete the form via the link below and contact your Member of Congress to ask them to join the RDLA.

EPP Patients: 

The RDLA has made it simple for you to send your Congress Member an email letter request.  All you need to do is copy and paste this link into your online browser to go to their website form.  Then input your name and address.  Your Congress Member's details will automatically populate a letter request and you will be able to insert a few sentences about yourself and EPP and send the email:         

Notice: You will send the original letter to the APF and send a copy to your Congressmen.

Thank you

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


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