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 the acute hepatic porphyrias.

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.