Raising funds for #EpidermolysisBullosa research and clinical trials. Please support us by joining our fundraising initiatives 🦋 Together we can #cureEB
London
Joined July 2012
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Cure EB retweeted
Auction - This is your chance to bid and win this original oil painting by Paddy Holland, with ALL proceeds gifted to our EB Charities - @CharityDEBRA @CureEBorg and @EBResearch
brotherstrust.rallyup.com/pa…
The auction closes Sun 8th Dec at 4pm EST #paddyholland #art #tomholland
Cure EB retweeted
‘House of Glass’ is a brilliant book and influenced the way I thought about my family story when I read it in 2020, before starting work on ‘Broken Threads’. Very happy to be with @HadleyFreeman for this, in support of @CureEBorg
We invite you to our fabulous Butterfly Speaker Lunch on 3rd December, featuring Mishal Husain @MishalHusain in conversation with Hadley Freeman @HadleyFreeman
cure-eb.org/speakerlunch
#CureEB #ResearchtheCure #MishalHusain #HadleyFreeman #BBC #BBCToday #SundayTimesBestseller
Cure EB retweeted
The @CureEBorg Butterfly Run is an #accessible event for people of all ages & abilities, challenging themselves to run, walk or wheel a 1k, 5k or 10k race. Sign up to run for The #LilyFoundation on Sun 22nd Sept Queen Elizabeth Olympic Park, London. ow.ly/rMxV50RSvLp
Cure EB retweeted
Did you come to our #RareDiseaseDay event last week? 🌟 Stem cell puzzles, DNA bracelets, and more!🧩
Thanks to all who helped make it happen! 💙 @NIHRresearch, North Thames GLH @NIHRBioResource, @CureEBorg
ALT A child plays with some colourful crafts at the DNA bracelet stall at the Rare Disease day event. A child studies something under a microscope with the help of a staff member at the mini lab stall at the Rare Disease day event. A child plays at the mini labs stall at the Rare Disease Day event, using a syringe and wearing a lab coat. A child engages with staff at the mini lab stall at the Rare Disease day event.
Cure EB retweeted
Any chance you could forgo one cup of coffee next week? If you can, help them #CureEB by texting CUREEB to 70560 or going to
cure-be.org/donate. Thank you! ##coffeetoCureEB
Cure EB retweeted
Oops. I spelt the website wrong. It should read:
cure-eb.org/donate.
Thank you to all those who’ve already donated. You are ✨
Any chance you could forgo one cup of coffee next week? If you can, help them #CureEB by texting CUREEB to 70560 or going to
cure-be.org/donate. Thank you! ##coffeetoCureEB
Cure EB retweeted
There are few better brunch buddies than @ameliagentleman, and I speak from much experience. Come join us! cure-eb.org/event/butterfly-…
Cure EB retweeted
Please help this brilliant charity, which I am patron of, @CureEBorg, find a cure for this horrible skin disease and help prevent aggressive forms of skin cancer in early adulthood. Thank you, 🦋
Cure EB retweeted
Gabrielius has to have his bandages changed 3 times a day - could you donate £3, the cost of a coffee, to help #cureEB?
Text CUREEB to 70560 to give £3.
#coffeetocure #hardtosayhelltolivewith cure-eb.org/coffee
Cure EB retweeted
Many thanks to my guests on this morning's edition of @SkyBusinessLive: @JuliePalmer999; Andy Lightfoot from @Space_NK and @lewis_damian - not forgetting all his friends from @SirHvHArts and @CureEBorg. Please join me again at 1630 UK time for our afternoon edition.
Cure EB retweeted
Things are getting a little bit heated on the trading floor for the #BGCCharityDay2023! @lewis_damian and @Sadieliza are both here raising money for HvH Arts. Keep it friendly, guys!
#BGCCharityDay #BGCCharityDay2023 #CantorRelief #NeverForget #GiveBack
Cure EB retweeted
A very special day for everyone at our Uncharted screening.🎥 Raw Pixels London
@CharityDEBRA @alexswish @CureEBorg @MomentumCharity @GOSHCharity @rainbowtrust @MakeAWishUK @DuchenneUK @AutismPeak
youtube.com/watch?v=yFoj0oPD…
Cure EB retweeted
The BEST day 💙 A huge thank you @Tbrotherstrust for making wishes come true! - Callie
Cure EB retweeted
@CureEBorg @_BSGCT privileged to have Sharmila Nikapota as patient representative at BSGCT 2023, increasing awareness in Epidermolysis Bullosa and filling us with hope with the cutting edge gene therapy research underway that they help fund.
Cure EB retweeted
It's now less than two weeks before - weather allowing - I'm aiming to do my skydive to raise money for @CureEBorg.
Thanks so much to all who have donated already, very much appreciated.
If you haven't yet and can, I'd be very grateful: justgiving.com/fundraising/c…
Many thanks
Cure EB retweeted
Hey everyone, be so great if you could help out….
Please listen to @CureEBorg founder Sharmila describe life with EB and why they need your support on the Radio 4 appeal this week. bbc.co.uk/programmes/m001ly7… #cureEB #researchthecure #healEB #fightEB #R4appeal @CollinsSharmila
Cure EB retweeted
This week’s #R4Appeal comes from @CollinsSharmila the founder of charity @CureEBorg which helps fund research into epidermolysis bullosa, a severe and painful skin condition.
Cure EB retweeted
This week’s #R4Appeal comes from @CollinsSharmila the founder of charity @CureEBorg which helps fund research into epidermolysis bullosa, a severe and painful skin condition.
Cure EB retweeted
Please listen to @CureEBorg founder Sharmila describe life with EB and why they need your support on the Radio 4 appeal this week. bbc.co.uk/programmes/m001ly7… #cureEB #researchthecure #healEB #fightEB #R4appeal @CollinsSharmila
Cure EB retweeted
Years of work by Dr. Andrew South @JeffersonUniv identify a therapy to treat the life-threatening cancer in patients with a rare disorder called butterfly disease @CureEBorg. Read more in the #JeffersonResearch Magazine: bit.ly/3AO4nWC
Illustration - Greg Betza @gbetza
