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.

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