EXCITING NEWS for EPP AND XLP FRIENDS

Monday, May 5, 2025

Be a MEDICAL HERO, join a research trial for yourself and others!!!!!
New Bitopertin Clinical Trials Now Enrolling for EPP and XLP

Clinical trials are now open to evaluate the safety and effectiveness of bitopertin in treating erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) in individuals aged 12 and older. Bitopertin, also known as Disc-1479, will be researched at various study sites across the country with more sites opening in time.

The study aims to answer two key questions:

Does bitopertin increase pain-free sunlight exposure after six months of treatment?
Do PPIX concentration levels change from before bitopertin treatment to after 6 months of treatment.

Participants will receive either bitopertin or a placebo (a look-alike substance with no active drug). They’ll complete daily questionnaires and attend regular study visits for monitoring and assessments. Travel expenses and trial related expenses will be paid by the sponsor. For details including the eligibility criteria, please contact the APF.

If you are interested in joining the trials or want more information about the trials, please contact the APF at 866-APF-3635 or pax@porphyriafoundation.org . Joining the trial is very simple, and the result can be life changing !!