Xeroderma Pigmentosum UK

Welcome to all!

Hi everyone,

Welcome to the launch of the Xeroderma Pigmentosum (XP) community page started by the UK National XP Service. Firstly, this community is for you and your families and friends to talk about XP. We are asked many times to what others with XP do in various situations. We believe you are the best people to respond to these questions. We hope you agree.

This community page is a way for you to network with other people affected with XP right across the world. As many of you know, some people with XP can feel very isolated due to the nature and management of the condition. Through this community we hope you will find global support and share experiences of how to cope with day to day living. The idea with this community is to have a non-judgemental platform where we learn from each other.

We will contact many of you to help us make this a success. Please share the link to this page with anyone affected by XP who would like to contribute.

To get the ball rolling, please tell others about your experience of Xeroderma Pigmentosum.

P.S. Do you like our logo for the community page?

Best wishes,


4 Replies

Hi my name is Cathy and I have a son James who is 25 years old. He has XPD and although has no skin cancers due to protection he has severe neurological involvement. I have a daughter who doesn't have XP and a beautiful 5 month old grandson--- that part makes me feel old lol


Hello, we are very excited to see this new XP Community site and I am sure it will become a great hub for advice and information. My name is Nicola and my husband Andrew and I have a 3 year old son Eddison with XP-D and a 2 year old son without XP. We run Teddington Trust teddintontrust.wordpress.com



My name is Rich; i have XPV and live in London. This was a good idea!


Hi my name is Umar, I'm 21 years old and i have XP-C.