XPD - neurological presentation
EmilyRobertshaw2 months ago
I’m Emily my son Louis is 11 years old and has XPD, with neurological problems including hearing loss, learning difficulties etc...
XP: Wrap around sunglasses
ajaibxp5 months ago
I hope that this information is useful to others.
I managed to find an excellent pair of sunglasses for my 16year old son who has XP.
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Assil5 months ago
Hello , My daughter Assil 3 years old , has recently diagnosed with XPC .
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XP and Disability Living Allowance
ajaibxp2 years ago
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...
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PIP appeals / Tribunal
wakey09002 years ago
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...
Safe Adapted Accommodation in Kent
TeddingtonTrust3 years ago
Good News - We have secured another adapted site which will be ready for use with adaptions completed by mid July.
Adaptations will include D...
Surviving Summer - Survival Guide?
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...
Feedback from - UK Gentic Disorders Leadership Symposium
Some useful links following attending the UK Gentic Disorders Leadership Symposium
Particularly useful links fo...
James-XPD3 years ago
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...
XP In London
rb9089083 years ago
Is there any XP people in london?
If so what do you particularly like doing / found anything that particularly suits the nocturnal life ...
Xeroderma pigmentosum from tunisia
Manel4 years ago
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 ...
XP Siblings - Reading Reference.
TeddingtonTrust4 years ago
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...
Welcome to All
Waks24104 years ago
My name is Waqas and I have XP-C and im 25 years old!
Welcome to all!
Luna20104 years ago
Welcome to the launch of the Xeroderma Pigmentosum (XP) community page started by the UK National XP Service. Firstly, this com...
4 top ways to boost the visibility of your Xeroderma Pigmentosum posts
HugoHU4 years ago
Hello everyone. I'm Hugo, Member Relations Manager at HealthUnlocked, here to share a couple of tips. When you’re starting an online movemen...
Introduce yourself to the community
LuciaHU4 years ago
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...
Start a Community