Researchers at Stanford University are conducting a research study to better understand the pain experienced by people with EPP and its impact on quality of life and daily behaviors. Participation involves completing a ~10 minute online survey.

Help guide future education, increase awareness, and support the development of practical tools such as prompting guides, disease-specific chatbots, and other helpful resources.

Sponsored by Portal Therapeutics. This study tracks the disease and its impact on individuals living with Erythropoietic Protoporphyria (EPP) or X-Linked Protoporphyria (XLP).

You do not need to have porphyria to participate in porphyria research. Learn how you can get involved!

The GATEWAY Phase 2 Study is enrolling adults with Erythropoietic Protoporphyria (EPP) to test a potential new treatment.

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.

Help develop a handbook for EPP parents by sharing your experiences in this brief survey.

The goal of this questionnaire is to better understand how EPP/XLP impacts the lives of individuals with this condition.

The goal of this research is to better understand the drivers and barriers to accessing care and treatment in EPP/XLP.

This focus group with focus on mental health and mental health resources for cutaneous porphyrias.

An FDA-sponsored study to assess whether cimetidine a medication normally used to treat gastrointestinal issues such as ulcers or acid reflux) reduces protoporphyrin IX (PPIX) levels which may impact photosensitivity.

MT-7117 is a potential treatment for EPP and XLP. Recruiting patients ages 12+. International and US sites.

Long-term study to learn more about the disease course and quality of life for all the porphyrias. Open to US residents with a confirmed diagnosis of porphyria.

Study to better understand why some patients with EPP and XLP experience more severe symptoms than others.