Last Call for Priority Review Letters + Clinical Trials


Last Call - Request Priority Review of Scenesse


The new drug application for Scenesse has been submitted to the FDA - and it is time to advocate! We need your letters to the FDA Commisioner requesting Priority Review. Please send your letter immediately to add to our growing pile!! It is starting to look impressive!

All letters must be signed and emailed to the APF this weekend. We will submit the letters to the FDA on Monday July 23, 2018.

Begin your letter:

Scott Gottlieb, M.D.
FDA Commissioner
U.S. Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993

Dear FDA Commissioner:

Scan or Email your signed letter to:

We will present all of the letters at once to the FDA! Right now we have 478 letters. Let's get to 500! Please send letters today! Time is of the Essence!


Clinical Trial for EPP!

Research is the key to your cure! What is the most important element in research? YOU! You now have an opportunity to participate in a trial for a new EPP investigational drug. Contact the APF for details. YOU are our hope for the future. Contact the APF on 1-866-APF-3635 or email

An oral investigational drug has been developed with the potential to increase sunlight duration and tolerance in individuals with EPP. This phase II clinical trial is needed to understand if the investigational drug works and to ensure that it is safe. The study duration is 24 weeks including follow-up. You must be age 18-70 to participate

and have a confirmed diagnosis of EPP. All travel is included and will be arranged by a concierge service.

"Remember...Research is the key to YOUR cure!”

Each Step Toward Finding an Effective Treatment is Important!


Harvoni Study - PCT   

The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.

Who can participate?

Adult patients with PCT who also have Hepatitis C

If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information.


Update your records....

We have moved.


The American Porphyria Foundation is excited to announce out move to Bethesda, Maryland - next door to our nation's capital. Please update your records with our new address.

American Porphyria Foundation
4915 St. Elmo Ave., Suite 105
Bethesda, MD 20814
Telephone: 301.347.7166



Support the APF through Amazon Smile

You can now support the APF through the AmazonSmile program! Amazon will donate 0.5-0.8% of the price of your eligible purchases to the APF, at no cost to you. Please make the APF your choice of a charitable organization. Support porphyria research while shopping!

Note, this program to provide donations to the APF will ONLY be available to shoppers who visit Amazon via a special web address, namely, instead of the normal homepage.

It is easy and free! AmazonSmile is the same Amazon you know – same products, same prices, same service.

Thank you for supporting us! Please follow the link: