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EPP Clinical Trials: Volunteers Needed!

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. 

**Note: If you have not been contacted by a research coordinator please reach out to the APF office at 301.347.7166. **

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
porphyrus@porphyriafoundation.com

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

Each Step Toward Finding an Effective Treatment is Important!