#facesofeb - Twitter Hashtag

over 1 year ago

"I hope that one day they find a cure for my baby’s condition and for all that have this painful disease." Kit's mum tells us about finding out that Kit has Junctional Epidermolysis Bullosa when he was born: https://t.co/bgye5C9lgY #CureEB #ResearchtheCure #EB #JEB #FacesofEB

CureEBorg's tweet photo. "I hope that one day they find a cure for my baby’s condition and for all that have this painful disease."
Kit's mum tells us about finding out that Kit has Junctional Epidermolysis Bullosa when he was born: https://t.co/bgye5C9lgY

#CureEB #ResearchtheCure #EB #JEB #FacesofEB https://t.co/wSbzivCGfc

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Jodie Fellows clinical health psychologist @JodieHealth

over 2 years ago

Parents of children (up to 16) with EB, please consider this online survey. Study will develop a wellbeing toolkit for parents with EB @CharityDEBRA @EBResearch #CureEB #FacesofEB #EBStories #EpidermolysisBullosa Survey: https://t.co/ah6XagFKwl Info: https://t.co/vf9t49xaNI

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Cure EB @CureEBorg

over 2 years ago

Albi's mum & grandma tell us a bit about him💙🦋 To read more of his story, visit https://t.co/MBtMZX4V5G #CureEB #ResearchtheCure #FacesofEB #EBStories #EBSmiles #EpidermolysisBullosa #EB #Research

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Cure EB @CureEBorg

over 2 years ago

Albi has recessive dystrophic epidermolysis bullosa. His mum, Erin, shares his story. https://t.co/MBtMZX4V5G 💙🦋 #CureEB #ResearchtheCure #FacesofEB #EBStories #EBSmiles #EpidermolysisBullosa #EB #Research

CureEBorg's tweet photo. Albi has recessive dystrophic epidermolysis bullosa. His mum, Erin, shares his story. https://t.co/MBtMZX4V5G 💙🦋

#CureEB #ResearchtheCure #FacesofEB #EBStories #EBSmiles #EpidermolysisBullosa #EB #Research https://t.co/C9A33fUj0C

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Cure EB @CureEBorg

over 2 years ago

"I have not only survived to the age of 20, but grown into a person who gains confidence from what I endure... brushing the ash off my butterfly wings & continuing to live for as long as I can." Read Sohana's story: https://t.co/6xKd3FHkzz #CureEB #FacesofEB #MyEB #EBStories

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Cure EB @CureEBorg

over 3 years ago

"When I was born, not much about EB was known". Thank you Jennifer for sharing your #myEB story. Visit https://t.co/qSSMCVmfEw to read more of her story or to share your own. 🦋🦋 #EBStories #FacesofEB #CureEB #ResearchtheCure #StopthePain #HealEB #FightEB #EBResearch #EBSimplex

CureEBorg's tweet photo. "When I was born, not much about EB was known".
Thank you Jennifer for sharing your #myEB story. Visit https://t.co/qSSMCVmfEw to read more of her story or to share your own.
🦋🦋
#EBStories #FacesofEB #CureEB #ResearchtheCure #StopthePain #HealEB #FightEB #EBResearch #EBSimplex https://t.co/1PX5TXBhK4

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Cure EB @CureEBorg

over 3 years ago

"Living with EB has taught me how to be strong and tolerate severe pain... it will not stop me from chasing my dreams" 🦋💙 Ala'a shares her #EBStory with us: https://t.co/vAedvBnFX9 #myEB #EBStories #FacesofEB #CureEB #ResearchtheCure #StopthePain #HealEB #FightEB #EBResearch