Empowering children and young people with Erythropoietic Protoporphyria (EPP)/X-linked Erythropoietic Protoporphyria (XLP): Outcomes of attending a disease-specific residential camp.

Erythropoietic Protoporphyria (EPP) and X-linked Erythropoietic Protoporphyria (XLP) are rare photodermatoses that severely restrict children's participation in outdoor activities and contribute to anxiety, isolation and reduced quality of life. The British Porphyria Association (BPA) Alfresco Residential camp 2024 was developed to provide a medically safe environment for outdoor participation, facilitate peer connection, and promote shared learning between families and porphyria experts. This evaluation examined the experiences of attendees to determine whether the event met these aims. A mixed-methods post-event assessment was conducted using anonymous surveys for young people and parents/carers, complemented by qualitative thematic analysis and triangulation with observational video and photographic material. No phototoxic reactions were reported, indicating that environmental adaptations and activity planning created a safe setting for outdoor participation. Respondents reported high satisfaction with the camp, strong enjoyment of activities, and increased confidence to engage in outdoor experiences that are otherwise avoided due to light sensitivity. Social connection emerged as a key benefit, with participants highlighting the value of meeting others who share the condition and parents emphasising emotional reassurance and shared learning. Observational footage supported survey findings, showing active engagement, positive peer interactions and full participation in outdoor activities. This evaluation suggests that a disease-specific, sun-safe residential can effectively reduce barriers to outdoor activity, enhance social support, and complement clinical care for young people with EPP/XLP and their families.