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Imagine not being able to go out in daylight. That’s the struggle young people living with Xeroderma Pigmentosum (XP) face every single day.
XP is a life-threatening skin condition, which makes patients hypersensitive to UV light. The condition is so rare that there are only about 100 people living with XP in the UK. Sadly, there is currently no cure.
As a result of the condition, it’s extremely difficult for XP patients to go outdoors, which means it can be hard for families to take part in normal day-to-day activities together.
Global’s Make Some Noise is proud to be working with the XP Support Group and funding their Owl Patrol Camp – a special project for XP patients and their families, taking place annually in Scotland.
This brilliant project is in such high demand, that there’s a waiting list every year. It’s an opportunity for families living with XP come together to take part in a range of activities – indoor during the day and outside at night. They also have the chance to find out more about the condition from experts, as well as spend time with other families in the same situation.
James has been receiving support from the charity since he was 8 years old. His parents, Cathy and Philip said: “Owl Patrol is a weekend where you don’t have to feel alone and can share time and experiences with others that understand.”