Hi

We are a family in West Yorkshire. My son has XP. He is now 14. We used to receive Disability Living Allowance DLA but it has now been rev...

Hi there im looking for some advise on PIP appeals, I was a pip claimant and was awarded enhanced care last year, i had a new diagnosis so i...

Good News - We have secured another adapted site which will be ready for use with adaptions completed by mid July.

Adaptations will include D...

Like all parents of XP children and XP patients the world over, our thoughts are starting to turn to the difficult (near impossible for hott...

Some useful links following attending the UK Gentic Disorders Leadership Symposium

teddingtontrust.wordpress.c...

Particularly useful links fo...

After 23 years of making James a protective hat I made one following the video on XP Family Support Group site. Adapted to a baseball cap ...

James went to ENT yesterday. The examination light was an above light and was very small with a magnifying glass underneath. We use a UV me...

Hey

Is there any XP people in london?

If so what do you particularly like doing / found anything that particularly suits the nocturnal life ...

Hello, i'm manel from tunisia i have 1 sister and 1 brother with XP-C i'm also member ine the association of XP here in Tunisia, i'm also a ...

A friend send me this link to a book written for parents to help with issues around siblings and he complex issues arising from having a spe...

My name is Waqas and I have XP-C and im 25 years old!

Hi everyone,

Welcome to the launch of the Xeroderma Pigmentosum (XP) community page started by the UK National XP Service. Firstly, this com...

Hello everyone. I'm Hugo, Member Relations Manager at HealthUnlocked, here to share a couple of tips. When you’re starting an online movemen...

We’re excited about what you can go on to do for those children and their families affected by XP (Xeroderma Pigmentosum). We hope you are t...