EPP Clinical Trial Reminder. We need YOU!

  • Monday, January 7, 2019


A clinical trial with an oral investigational drug intended to reduce phototoxicity in people living with EPP is underway.

Please note that a Phase 3 study is very unlikely if Phase 2 is not completed. To date, this drug has proven nontoxic and there have been essentially no dropouts in the Phase 2 study to date.

This is an oral drug which makes administration simple.

This study in adults will pave the way for a near-future pediatric trial. EPP is a rare disease and patients must participate in order to get the drug approved. 

To date, there is no public information on the availability of Scenesse, and if approved, two drugs on the market may lower their cost.

We will connect you with a Research Coordinator that will answer all your questions and concerns. We will work to make this process as easy as possible for you. 

Eligibility Criteria:

  • Confirmed diagnosis of EPP
  • Provide written informed consent to participate
  • Be willing and able to travel to all study sites for scheduled visits
  • 18 - 70 years of age at the time of screening.

Sites enrolling:

  • Mount Sinai - New York City
  • Wake Forest Baptist University - Winston Salem, NC
  • University of Miami - Miami, FL
  • University of Texas Medical Branch - Galveston, TX
  • University of Utah - Salt Lake City, UT
  • University of California San Francisco - San Francisco, CA

We need YOU! Please dig deep and consider being part of this changing moment for all with EPP.



Contact us here at the APF office to get in contact with a research coordinator.
301.347.7166 or 1.866.APF.635
Email Us!!

"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!