Spotlight Porphyria

Welcome to Spotlight Porphyria where we feature all things porphyria! Including:

Porphyria Voices shares experiences, insights, and advice from the porphyria community.

What's UP Doc? Where porphyria experts take your questions.

Summing UP explains the latest research in easy-to-understand summaries

Meet your experts and advocates where we meet the people changing the world for porphyria.

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Mental Health in the Porphyrias
Summing UP United Porphyrias Summing UP United Porphyrias

Mental Health in the Porphyrias

This study involved focus groups with porphyria patients to explore the emotional and psychological challenges they face. Participants discussed their lived experiences, shared coping strategies, and offered recommendations for additional support to improve their quality of life.

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