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2 day old Afghanistan Bart syndrome/cong. localized absence of skin
#epidermolysis#bullosa#dermatology#pediatricspic.twitter.com/oU65EcXK8j
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October 21-27 is
@debraireland National#Epidermolysis#Bullosa (EB) Awareness Week and this year there is cause for celebration as researchers in UCD's Charles Institute for#Dermatology@CharlesUCD make an important breakthrough!https://www.itv.com/news/2019-10-21/irish-scientists-announce-breakthrough-on-genetic-skin-disease/ … -
Dr. Dedee Murrell and Dr. Francis Palisson will deligth us with their
#MainTopic:#EPIDERMOLYSIS#BULLOSA @dgoaim pic.twitter.com/tSSlppUhtO
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DEBRA raised 117K after 14 yr old Jonathan shared his story of the challenges of living with
#Epidermolysis#bullosa. http://www.ottawacitizen.com/news/local-news/russells-jonathan-pitre-raised-117000-for-charity … -
Rare Diseases = Orphan Diseases. Not lucrative for drug/research companies. Rely on private funding/grants.
#epidermolysis#Bullosa -
@Retrophin thx 4 being#rarerockstars. Your#music hits the road to turn up the volume 4#Epidermolysis#Bullosa pic.twitter.com/E6lmuC4iDP
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Dr Bruckner-Tuderman on
#epidermolysis#bullosa at the#REACTCongress@debraireland@DEBRACanada@CharityDEBRA@CharityDEBRA#RAREvolution -
@Retrophin thx for making#music with us 4#raredisease. Together we are#rarerockstars!#Epidermolysis#bullosa pic.twitter.com/hub4NHT7Qr
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Congrats!
#EBawareness@MichaelBenny Easton's story is nominated for a@NYEmmyAwards http://youtu.be/Nnqo2O9pvhg#eb#epidermolysis#bullosa -
@DEBRACanada has a beautiful tribute to Jonathan Pitre, a young man living with EB who sadly, passed away last week. Jonathan was a brave Ambassador for#Epidermolysis#Bullosa, and brought much awareness to the disesase. Read more at their tribute page http://ow.ly/egsA30jpL1e -
#FAST#Fastnet Equity unveils transformational drugs deal http://tinyurl.com/hcs8avj via@proactive_uk#epidermolysis#bullosa#amryt#pharma -
A touching story of how one mother is coping with the loss of her son, who lived with
#epidermolysis#bullosa http://ow.ly/riln30jysd7 -
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A new paper: Genotype–Phenotype Correlations of Dystrophic Epidermolysis Bullosa in India: Experience from a Tertiary Care Centre
#Genotype#Phenotype#Dystrophic#Epidermolysis#Bullosa https://www.medicaljournals.se/acta/content/html/10.2340/00015555-2929 … -
Castle Creek Pharma Receives Partners in Progress Award from debra of America http://sumo.ly/Id6c
#Dystrophic#Epidermolysis#Bullosa -
...fent algunes passejades que normalment ens enganxen molt lluny, com la
#Vall de#Galba o els#estanys de la#Bullosa... encara amb molta neu i gel als estanys més alts o a les obagues. pic.twitter.com/ERniIwKPRU
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Uns dies a la Cerdanya
#catalunyanord#capcir#cerdanya#estatfrances#vall#galba#bullosa#estanys#neu#niege#snow#passejades#catalunya#catalonia#catalogne#muntanya#mountains#montagnes#pirineu#excursio#excursion#trekkingpic.twitter.com/AFrxjY6rl1
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#Firlej: spotkanie rodzin dotkniętych choroba#EB (#Epidermolysis#Bullosa). Dziś wieczór ze Świdnik Gospel Choir. Inspirujący przebój#U2@U2 wykonali wspaniali ludzie dla wspaniałych ludzi@EpiskopatNews@GoscLubelski@agencja_KAI@agencja_KAIpic.twitter.com/LeuhQfE7QB -
W Firleju spotkały się rodziny z całej Polski. Łączy ich jedno: choroba
#EB (#Epidermolysis#Bullosa) pęcherzowe oddzielanie się naskórka. Warsztaty rodzin zorganizowało Stowarzyszenie Debra.#Firlej@EpiskopatNews@GoscLubelski@agencja_KAI@agencja_KAIpic.twitter.com/zKqfXWXo0T
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