The XP Support Group is a UK Charitable Trust whose aim is to relieve the needs of people with Xeroderma Pigmentosum and other related conditions.
We provide practical advice and support to patients about how to live with XP and aim to show people that living a life being protected from UV rays does not mean living a life in isolation.
We raise funds for research, give grants for UV protective equipment and assist families to attend night time camps.
The XP Support Group is a small charity with a board of 6 trustees and was set up in 1999 by the parents of a child with XP. At that time there was very little information and no support for families affected by XP and the charity was borne out of a desire to pool together knowledge and make things easier for other families.
We provide practical advice to new patients in the early days after diagnosis and continued support thereafter. We were instrumental in setting up the dedicated Multi-disciplinary XP Clinic at St Thomas Hospital which gives patients access to a range of specialists and we are available at the clinic to meet with families. We continue to work very closely with the team at the clinic.