We fundraise throughout the year and use the funds raised to provide support to patients with XP. This includes running a night time retreat for patients and their families (Owl Patrol), providing UV meters to all newly diagnosed patients and sending visor film to all patients throughout the UK.
We provide practical help and advice to newly diagnosed patients such as advising on how to keep safe from UV and reimbursing travel and subsistence expenses for patients travelling to London for the clinic. We are also constantly looking into ways to make life easier for patients.
We attend dermatology conferences to raise awareness of XP and to keep abreast of relevant developments and we have close links to other charities for similar light sensitive skin conditions. In the UK we work with the Teddington Trust and we also have close working relationships with XP charitable organisations around the world.
We are a small charity, run entirely by volunteers. We work hard to keep our expenses to a minimum so that funds raised for us go directly to improving the lives of people with XP.
If you would like to help us fundraise, please click here.