Top Tweets for #thisisxp
We are always looking for new ways to fundraise, if you have any bright ideas this #rarediseaseday then please get in touch with us @actionforxp, we would love to hear from you. #thisisxp #RareDiseaseDay2024 #RDD2024 #RDD #XP #XerodermaPigmentosum
It doesn’t matter what stage of your life journey you are at, we are here to help. So whether you need us now or in the distant future, always know you are not alone
#TuesdayTakeover #ThisIsXP #ActionForXP
https://t.co/i6WcLDbVwb
Patients with XP lack fully functioning DNA repair mechanisms which means people with XP are 10,000 times more susceptible to skin cancer than the general population
#TuesdayTakeover #ThisIsXP #ActionForXP
https://t.co/wPe6DXRrAS
Xeroderma Pigmentosum (XP) is a very rare genetic condition characterised by an extreme sensitivity to ultraviolet radiation (UVR) which affects around 120 in the United Kingdom and equally low numbers around the world.
#TuesdayTakeover #ThisIsXP #ActionForXP
To make sure you continue to see our content on your feed, make sure you're following us on Facebook and Twitter at @ActionForXP or using the details below. Thank you for having us @RareRevolutionMagazine - until next time! 👋 #ActionForRare #ThisIsXP #TuesdayTakeover
Caught out by the sun? 🔆 😧
For people with #XerodermaPigmentosum photoprotection is a daily issue.
New #Research identifies factors that help
#OpenAccess: https://t.co/sybV3GDXGF
#ThisIsXP #RareDisease @TeddingtonTrust @XPSupportUK @RareRevolutionM #Dermatology #DermTwitter
Sun safety isnt just something those affected by XP need to be concerned about. Here is why early education on sun safety is a matter for us all the care about. #ThisisXP #xerodermapigmentosum #TuesdayTakeover #XPInternational #ICCD2022
https://t.co/A99kmevm5R
Education is key - that is why we created our own bespoke in-school education programme to help UK wide schools build sunsafety, inclusion and XP awareness into their curriculum in a fun engaging way. #ThisisXP #xerodermapigmentosum #InclusiveEducation https://t.co/QKOsD4raQf
Promoting healthy UV protection habits while living our best lives is paramount in our work at @TeddingtonTrust. Our Big Teddington Sleepover events are the perfect way to combine both, whilst bringing families together. #ThisisXP #xerodermapigmentosum #XPCommunity
The corner stone of skin cancer protection is photoprotection. Facial protection is the biggest challenge. Families wear visors which protect skin and eyes. Teddington Trust have shipped over 1,000 worldwide.#ThisisXP #xerodermapigmentosum #XPInternational #ICCD2022
At @TeddingtonTrust we recognise how challenging it is for families to go on holiday. Our Project Breakaway aims to secure UV safe accommodate across the UK. Spread the word. #ThisisXP #xerodermapigmentosum #TuesdayTakeover #SunSensitivities #ICCD2022
https://t.co/ymcZEE5htF
XP impacts on all aspects of daily living. The best way to explain the impact is to consider—where there is air there is the potential for light therefore vigilance and the need to plan and protect is vital. #ThisisXP #xerodermapigmentosum #TuesdayTakeover #ICCD2022
People with XP are also more susceptible to cancers of internal organs thought to arise from dysfunctional DNA repair. #ThisisXP #xerodermapigmentosum #TuesdayTakeover #ICCD2022
Xeroderma pigmentosum is an ultra-rare multisystem condition affecting less than 120 people in the UK. #ThisisXP #xerodermapigmentosum #TuesdayTakeover
Individual’s with XP cannot repair damage induced by UVR, rendering them 10,000 times more likely to develop skin cancer compared with the general population. #ThisisXP #xerodermapigmentosum #TuesdayTakeover #ICCD2022
#XerodermaPigmentosum (XP) is characterised by an extreme sensitivity to ultra-violet radiation. UVR is a specific wavelength of non-visible light, present during all daylight hours and can be emitted from artificial lighting. #ThisisXP #ICCD2022
https://t.co/DpBrbay0vD
We are super excited to make some noise today about the ultra-rare condition #XerodermaPigmentosum. So let's start at the beginning and let our favourite fury friends, Little Ted and Baby Rhu explain to us all: What is XP? #ThisisXP #TeddingtonTrust
https://t.co/9R1qXNA9Rm
https://t.co/gTMFJlHgOz
Merci @franceculture pour cette mise en lumière !
#enfantsdelalune #ThisisXP
Today is #Bears4Rare day, an iniative from
@TeddingtonTrust to raise awareness and funds to support families affected by xeroderma pigmentosum. Visit their website to find out more https://t.co/HrNs8lYLVj
#ThisIsXP #xerodermapigmentosum #Teds4Teddington
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