Participate in Research
Participating in research is an important way you can contribute to the porphyria community. Research helps:
Develop and test new treatments for porphyria
Better understand the needs of people with porphyria
Check this page regularly or subscribe to our newsletter to hear about new opportunities as they become available!
Current Research Opportunities
APOLLO Study for EPP & XLP – Now Recruiting
Participant recruitment is now underway for the APOLLO Study, a clinical trial evaluating Bitopertin, an investigational oral medication for individuals with Erythropoietic Protoporphyria (EPP) or X-Linked Protoporphyria (XLP). The study aims to assess whether Bitopertin can reduce protoporphyrin IX levels and potentially lessen symptoms from sun exposure.
Fast Facts:
Study Type: Phase 3, Multicenter, Randomized, Double-Blind, Placebo-Controlled
Who Can Participate? Individuals age 12+ with a confirmed diagnosis of EPP or XLP
Study Medication: Investigational oral therapy (Bitopertin)
Study Sites: U.S. sites opening soon
Travel & related expenses covered by the study sponsor
Includes an optional open-label extension
If you are interested, please complete the confidential interest form below and be connected to a site near you. Filling out the form does not obligate you to participate.
For more information, contact: president@porphyriacanada.ca.