Xeroderma Pigmentosum UK | HealthUnlocked

Hello , im looking to purchase an XP visor for my friends 11 year old and having no luck, please could someone point me in the right direction? do they even...

Sorry if this is a basic question- I am new here

Who can give online consultation?

https://www.telegraph.co.uk/news/2019/08/29/parking-permits-extended-people-hidden-disabilities/ People with hidden disabilities can apply for blue badge...

My child will be joining the school next semester, through my search I have read that there is a check list that parents should share with the school to make...

I am a university student diagnosed with Xeroderma Pigmentosum (XP).

Buongiorno , ho letto di un esperimento per una possibile cura tramite farmaco per il diabete. Nessuno di voi sa qualcosa o novità in tal senso?

https://www.gov.uk/government/publications/blue-badge-disabled-parking-scheme-eligibility-consultation-summary-of-responses-and-outcome/blue-badge-consultation-

Did anyone see BBC2 'inventing the impossible' Big Life Fix ? Id be interested to know your thoughts on what they invented to protect someones face from...

it's not painful but it make my eyes seem puffy and multi-colored purple yellow blue like bruised ! it's been there since 2 months .. my eyes burn and pain.. i...

Hi all. I’m Emily my son Louis is 11 years old and has XPD, with neurological problems including hearing loss, learning difficulties etc... I’m really keen to...

Hi 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. It is shocking that...

Hello , My daughter Assil 3 years old , has recently diagnosed with XPC . Regards , Ibrahim

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 We used to receive Disability Living Allowance DLA but it has now been revoked. I have read...

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 contacted the dwp...

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

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

Some useful links following attending the UK Gentic Disorders Leadership Symposium...

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 as James doesn't...

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 meter and allow James...

Hey Is there any XP people in london? If so what do you particularly like doing / found anything that particularly suits the nocturnal life here? Rich

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 PhD student i work...

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 special brother or...

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 community is for you...

Hello everyone. I'm Hugo, Member Relations Manager at HealthUnlocked, here to share a couple of tips. When you’re starting an online movement there’s nothing...

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 too. Write something...