XP Support Group UK

Make Some Noise Case Studies XP Support Group

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.” 

Find out more on the XP Support Group UK website.

For more information, visit makesomenoise.com

The Vamps V Festival

V Festival 2017 LIVE: Catch All The Action From Backstage

Snapchat Accounts Ariana Kim K Rita Ora

80+ Of The Biggest Celebrities You Really NEED To Add On Snapchat Today

Capital Metadata - Capital App March 2017

Want To Control The Music On Capital? Now You Can With Our New App - My Capital!

#NewMusicFriday

#NewMusicFriday

#NewMusicFriday

  • Top Ten
  • 11 - 20
  • 21 - 30
  • 31 - 40
  1. 1
    What About Us artwork
  2. 2
    New Rules artwork
  3. 3
    Feels artwork
  4. 4
    Rain artwork
  5. 5
    Back To You artwork
  6. 6
    Despacito (Remix) artwork
  7. 7
    More Than Friends artwork
  8. 8
    Sun Comes Up artwork
  9. 9
    Instruction artwork
  10. 10
    Your Song artwork
  11. 11
    SUBEME LA RADIO artwork
  12. 12
    Came Here For Love artwork
  13. 13
    Pretty Girl (Cheat Codes x Cade Remix) artwork
  14. 14
    Wild Thoughts artwork
  15. 15
    Mama artwork
  16. 16
  17. 17
  18. 18
    Slow Hands artwork
  19. 19
    Attention artwork
  20. 20
    One Last Time artwork
  21. 21
    Symphony artwork
  22. 22
    Miracles (Someone Special) artwork
  23. 23
  24. 24
    Galway Girl artwork
  25. 25
  26. 26
    Power artwork
  27. 27
    Strip That Down artwork
  28. 28
    Crying In The Club artwork
  29. 29
    2U artwork
  30. 30
    Malibu artwork
  31. 31
    Rockabye artwork
  32. 32
  33. 33
    Real Life artwork
  34. 34
    Something Just Like This artwork
  35. 35
    Boys artwork
  36. 36
  37. 37
    Get Low artwork
  38. 38
    Mi Gente artwork
  39. 39
    Versace On The Floor artwork
  40. 40
  • Top Ten
  • 11 - 20
  • 21 - 30
  • 31 - 40
Visit the site