Top Tweets for #LifewithEB
#LifeWithEB: Meet Anisa, a fearless 5-year-old with DDEB, inspires with her resilience! Her mom developed adaptive clothing to protect her skin and bring joy. They hope to support other EB families too. πͺπ
Help by taking their survey: https://t.co/VUad2BxTho
#EBRP #EBawareness
This #InternationalNursesDay, join us in saying thank you to all the incredible EB specialist nurses who go above and beyond to deliver outstanding care to the EB community. π
#EpidermolysisBullosa #EBResearch #LifeWithEB #Nurse #Nursing #Nurses #NHS
This week on our blog Natasa shares her love for books ποΈ, art π©βπ¨, coffee βοΈ, and more!! Read more about #LifewithEB at https://t.co/4wGGpISlFl
In the latest edition of our EB stories blog, @AuthorLucyBeall, talks about what EB means to her.
"A future for people with EB is possible. We can see it. It is almost here."
Read more: https://t.co/HarCX0dfe9
#EpidermolysisBullosa #EBResearch #LifeWithEB #RareDisease #EB
πΊ EB on the news! πΊ
This weekend, DEBRA Ambassador @AuthorLucyBeall and CEO Tony Byrne were invited onto @GBNEWS to talk about #EpidermolysisBullosa and DEBRA.
Watch the full interview: https://t.co/hGiC47CjW4
#LifeWithEB #EBResearch #RareDisease #RareDiseases #SkinCondition
Wishing a happy #MothersDay to all the mums, grandmas and mother figures in our DEBRA community. π
#MotheringSunday #HappyMothersDay #EpidermolysisBullosa #EB #LifeWithEB #RareCondition #RareConditions
Please take 1 minute to read these inspiring words from Grace Fincham on her 18th birthday.
"Support the butterflies that live amongst you, the butterflies who push through each day." π¦
Happy birthday Grace, we hope you have a great day! π
#EpidermolysisBullosa #LifeWithEB
Typical of my incredible daughter @fincham_grace_ on her birthday. https://t.co/1NAPbSoOFV @CharityDEBRA
A wonderful interview with @Claudia61312789 and @JohnnySexton on @RTELateLateShow raising much needed awareness about what life is like living with the painful genetic skin condition, EB. π¦
#EpidermolysisBullosa #LifeWithEB
"Itβs one of the worst conditions out there. But, I donβt want to sit in a corner and cry about it. I have a life to live and I want to do the best I can."
Claudia and @JohnnySexton blew us away with their interview on @RTELateLateShow π
To donate βΆ https://t.co/oTH4KnmsDN
Join us for Parent Pitstop next Tuesday 17th January at 10am to meet Sophie, our Engagement Lead! π¬
To register...
π Contact our Membership team on 01344 771961 and select option 1
οΏ½οΏ½οΈ Email [email protected]
#EpidermolysisBullosa #EB #LifeWithEB
π Episode 2 of the 'Under My Skin' podcast is here! ποΈ
In our 2nd episode, Lizzie Mounter shares her experience of running the #LondonMarathon with EB Simplex.
π Click here to listen: https://t.co/o73tChdXZR
#EpidermolysisBullosa #EB #Marathon #SkinCondition #LifeWithEB
Join us for our Parent Pitstop on Winter Savings on Tuesday 8th November at 11am! βοΈ
Contact our Membership team to register...
π 01344 771961 and select option 1.
βοΈ [email protected]
#EpidermolysisBullosa #EB #EBSupport #LifeWithEB #EBLife
Meet Amelia, one of our Community Support Area Managers!
Our Community Support Team have a wide range of skills, knowledge and experience to deliver EB support services.
Find out more: https://t.co/o6BKsh8n0k
#EpidermolysisBullosa #LifeWithEB #EBLife #StopThePain #EBSupport
20 days to go until #ShowYourSeams day, will you be taking part? π
Wear your clothes inside out and bring in a donation to help improve quality of life for people living with EB.
Get involved: https://t.co/rsCx5auQhW
#ShowYourSeamsDay #EB #EpidermolysisBullosa #LifeWithEB
Did you know? We now have six holiday homes across the UK available at highly discounted rates for our DEBRA Members. ποΈ
Find out more and plan your stay here: https://t.co/pOvZ1M8eUu
#EB #EpidermolysisBullosa #DEBRAUK #DEBRAMemoryMakers #EBResearch #LifeWithEB
Words of wisdom from one of our DEBRA members. Do you have any advice for people living with EB going to school? Share your experiences below. π
Find out how our Community Support Team can help: https://t.co/8AV8eHsg4v
#EB #EpidermolysisBullosa #LifeWithEB #BackToSchool
Join us on Friday 21st October 2022 for #ShowYourSeams day! π
Wear your clothes inside out and bring in a donation to help improve quality of life for people living with EB.
Get involved: https://t.co/rsCx5aMrGw
#ShowYourSeamsDay #EB #EpidermolysisBullosa #LifeWithEB
For #BackToSchool week, we're sharing some stories from our EB members about their experience of going through school with EB. π
Do you have any advice for people living with EB on their educational journey? Share your experiences below!
#EB #EpidermolysisBullosa #LifeWithEB
With temperatures set to soar again over the next few days, we've compiled our tips on managing EB in the heat: https://t.co/BnGg5rbEfj π‘
Tell us your tips below!
#EB #EpidermolysisBullosa #LifeWithEB #UKHeatwave #Heatwave #HottestDay #HottestDayOfTheYear
Our DEBRA Ambassador @AuthorLucyBeall features in @BSFcharity's 'Skin Stories' series, sharing her experience living with EB.
Click the link below to read the article!
#EB #EpidermolysisBullosa #LifeWithEB #BritishSkinFoundation #BSF #DEBRA #SkinCondition
Lucy explains to us what growing up with EB has meant to her in our new Skin Stories blog post with @CharityDEBRA. Head over to: https://t.co/dX58d9cBD6 to read more #EBΒ #DEBRA #BritishSkinFoundation #BSF #RecessiveDystrophicEpidermolysisBullosa #EpidermolysisBullosa
Today is #WorldFriendshipDay, celebrating the importance and value of friendships in our lives!
Tag the friends you are grateful for below. π¬
#InternationalDayOfFriendship #EB #EpidermolysisBullosa #LifeWithEB
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