A Safe Space Under the Sun: New Evidence on the Wellbeing of Children and Young People with EPP and XLP

For many children and young people living with erythropoietic protoporphyria (EPP) or X-linked erythropoietic protoporphyria (XLP), sunlight rarely means carefree outdoor play. More often, it means pain and isolation. A new study published in Molecular Genetics and Metabolism shows that this can change: a residential camp designed specifically for this community allowed participants to enjoy outdoor activities without a single phototoxic reaction.

The study evaluated the BPA Alfresco Residential Camp 2024, organized by the British Porphyria Association (BPA). Its authors include Sue Burrell, GPAC's President, alongside the team of Victoria McGuire, the study's lead researcher and a member of the BPA.

What the study found:

No participant experienced a phototoxic reaction during the camp, thanks to careful activity planning and environmental adaptations.

Campers reported high satisfaction and greater confidence to take part in outdoor activities they would normally avoid because of their light sensitivity.

For many, meeting other children and families living with the same condition was the most valuable part of the experience.

Parents and caregivers highlighted the emotional relief of connecting with other families and learning alongside porphyria specialists.

For GPAC, this study confirms something we see again and again in our community: peer support and access to safe spaces matter just as much as clinical care. We celebrate this work by the BPA and remain committed to supporting similar initiatives with our member associations around the world.

Reference: McGuire, V.A., Morrison, S., Newman, G., Burrell, S., Jarvis, C., Gill, L. (2026). Empowering children and young people with Erythropoietic Protoporphyria (EPP)/X-linked Erythropoietic Protoporphyria (XLP): Outcomes of attending a disease-specific residential camp. Molecular Genetics and Metabolism, 149, 110284.

Is your association planning something similar? We'd love to hear about it — write to us at meme.carranca@gpac-porphyria.org.

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