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Vandaag vraagt mijn dochter aandacht voor EB. Een ziekte waarbij de huid zo kwetsbaar als een vlinder is.
#eb#EBdoejemee#vlinderkind#debra#epidermolysisbullosa#insideoutpic.twitter.com/eZBGL6JfCv -
“Mama, ik wil mijn vlinder-t-shirt aandoen, die ik van oma heb gekregen” “Vind je die mooi schat?” “Ik vind die supercool, en die hoort bij mij, want mama, ik heb wel de vlinderziekte eh, weet je nog!?” “Ja schat, dat weet ik nog
”
#epidermolysisbullosa#vlinderkindje -
Help Wim Hubers mee, morgen op weg naar Via Gladiola voor
#vlinderkind
#vierdaagse2019#blaren#eb#huidziekte#epidermolysisbullosa @4daagseinbeeld devierdaagsesponsorloop de_gelderlander Doneer rechtstreeks… https://www.instagram.com/p/B0BtldmIAHY/?igshid=f31enxn4cgt4 … -
#Coronavirus en#EpidermolysisBullosa - belangrijke informatie van het centrum voor blaarziekten in Groningen. Bij vragen zie contactgegevens in de onderstaande link! https://www.debra.nl/nieuws/128-coronavirus-en-eb … -
RT @jonkmanmf: Vacature
#EpidermolysisBullosa onderzoeker@umcg. - http://www.vacature.co/tweet.html?url=http%3A%2F%2Fbit.ly%2F2NGzIQK … -
@StichtingVK en#EpidermolysisBullosa "..The worst disease you never heard of..." in 90 seconden. Kijk deze indrukwekkende documentaire over EB. Hierom komen wij in actie vandaag!@InterDEBRA@StichtingVK#DEBRA#rarediseaseday2020#ebdoejemee https://youtu.be/vjMyuDthyCU -
What are the clinical diagnosis methods of epidermolysis bullosa?
#clinicaldiagnosis#epidermolysisbullosa#butterflychildren#rarediseases@CihanTastan_PhD@RaDiChallenge@nadiRare@NadirHasAgpic.twitter.com/K1O9bky91j
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Our postdoc Eiji and our former visiting scientist Esteban are attending to the
#ESDR2019 in Bordeaux. Please come and visit their poster on#EpidermolysisBullosa pic.twitter.com/uSg5tl0qMJ
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A great discussion and debate with our panel on the complexity of
#EpidermolysisBullosa!#EBWC2020pic.twitter.com/ODjLyTMe3u
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Would you consider taking part in the Irish EB Registry? Call the CHI-Crumlin EB clinic at 01-4282646 and ask to arrange a call to find out more at a time that suits you.
#EpidermolysisBullosa#register#EBpic.twitter.com/vIRdLSCLEw
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This is a
#bacteria handprint after a day out gardening. We are studying the#skin#microbiome and the immune system of people affected by#epidermolysisBullosa.#fightEB#AcademicChatter#scicommpic.twitter.com/yzE4GHbCAo – bij Birmingham Dental School
Deze collectie tonen -
How many bandages does an
#EB sufferer need for the#TranscontinentalRace? Too many!
#TCRNo6cap131#FightEB#TCRNo6#EpidermolysisBullosa pic.twitter.com/lc4dRVSYOh
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We are amazed by all the great & supportive people we have met at
@EBWorldCongress. Only together we can fight#epidermolysisbullosa. #FightEB#CollaborationIsKey#EB2020pic.twitter.com/AOcIWZdd1j
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Congratulations to Rebecca. Outstanding presentation about the care co-ordination of children with a rare disease called EB.
@UTS_Health@utsSoNM@Mcruickshank9#EpidermolysisBullosa -
A week of awareness for a disease that impacts 1 in 20,000 babies in the United States.
#EpidermolysisBullosa Awareness Week.#EBweekhttps://twitter.com/debraOfAmerica/status/1320379800809361408 …
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In honor of
#RareDiseaseDay I’m raising awareness about#EpidermolysisBullosa. Please share and help find a cure for this painful disease.#butterflychildrenpic.twitter.com/5cXBI4o7th
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The ongoing phase III EASE
#ClinicalTrial is enrolling#EpidermolysisBullosa patients to help find a potential new treatment option for EB. For more information contact EASEstudy@amrytpharma.com or check out the#ClinicalTrial website: http://bit.ly/2L2AP0I pic.twitter.com/CDUEK0LfOp
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Robb rode his
#bike from#JacksonvilleBeachFL to#SeattleWA & back to#ConeyIsland to raise awareness for#EpidermolysisBullosa (EB).
We donated #jewelry & received a postcard that he made it across the country!
| Read more about @thebigrideforeb at http://thebigrideforeb.com/ pic.twitter.com/JOP0xStJ0S
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So excited to launch our new exhibition at
#bdhopenwide today exploring#epidermolysisbullosa and our research looking at the skin microbes and the immune system and how those two things contribute to wound healing. pic.twitter.com/7tHwLEtCPg
Deze collectie tonen -
Filsuvez for EB Granted Priority Review https://bit.ly/3wTqeII
#filsuvez#EB#epidermolysisbullosa#treatment#priorityreview@debraOfAmerica
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