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

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

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.