Help UPA better understand the porphyria community’s experiences with health insurance coverage. What we learn will help us provide stronger support and resources related to coverage for clinical care and current and future treatments.

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!

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

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.