Virginie Bros-Facer

71 posts

Virginie Bros-Facer

@VirginieBF31

Scientific Director @eurordis (European Organisation for #RareDisease). Views are my own

Katılım Kasım 2015

120 Takip Edilen194 Takipçiler

Virginie Bros-Facer retweetledi

EURORDIS-Rare Diseases Europe@eurordis·15 May

Some younger members of the #raredisease community joined the fun at #ECRD2020!

Nina Knight @ Acrodysostsosis Support and Research@NinaKnight8

#ECRD2020 Thank you. My family and I are enjoying being a part of it. Both our children have been able to attend this virtual conference. The @acrodysostosis community appreciate the support we get from #EURORDIS.

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Virginie Bros-Facer retweetledi

Raquel Peck 🇧🇷 🇬🇧@RaqPeck·14 May

I must say I'm absolutely gobsmacked at how #ECRD2020 is being delivered. Congratulations @eurordis and conference organisers👏 I'm learning a lot and enjoying the sessions - what a great effort during #COVIDー19 times. #RareDiseases

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Virginie Bros-Facer retweetledi

EURORDIS-Rare Diseases Europe@eurordis·4 May

#News 5,000+#raredisease patients & their family members from 78 countries representing 900+ diseases have already responded to our #RareBarometer survey on the impact of #COVID19. Preliminary results are out today: download2.eurordis.org/documents/pdf/…

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Virginie Bros-Facer@VirginieBF31·29 Şub

EJP RD CELEBRATES RARE DISEASE DAY ejprarediseases.org/index.php/2020… #News We are #ejprd and we stand #together4rarediseases to celebrate the community on #rarediseaseday

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Virginie Bros-Facer@VirginieBF31·22 Eki

Dr. Annemieke Aartsma-Rus's video on IRDiRC irdirc.org/dr-annemieke-a… #rarediseases

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Virginie Bros-Facer@VirginieBF31·17 Tem

How rare diseases can impact mental health - rcnt.eu/qomr2 via @raconteur

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Virginie Bros-Facer retweetledi

EURORDIS-Rare Diseases Europe@eurordis·28 Haz

Nominate an individual or organisation for a EURORDIS #BlackPearl Award in recognition of their outstanding achievements for the rare disease community! #EURORDISAwards2020 blackpearl.eurordis.org/nominate/

EURORDIS-Rare Diseases Europe tweet media

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Virginie Bros-Facer retweetledi

Genetic Alliance UK@GeneticAll_UK·26 Haz

Allison Watson, co-founder of @Ring20UK and co-chair of @EpiCARE_ERN’s patient advisory group (ePAG) writes on the benefits European Reference Networks (ERNs) provide for rare disease patients across Europe. Read her blog here protect-erns.eu/how-epicare-ma… #ProtectERNs

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Virginie Bros-Facer retweetledi

EURORDIS-Rare Diseases Europe@eurordis·10 Tem

Applications are now open for the EURORDIS Winter School on Scientific Innovation and Translational Research! The next face-to-face training will take place in Paris 9 -13 March 2020. Apply to participate by 30 August. #EURORDISWinterSchool openacademy.eurordis.org/winterschool/

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Virginie Bros-Facer retweetledi

EURORDIS-Rare Diseases Europe@eurordis·15 Tem

New! Results from a #RareBarometer survey on #raredisease patients’ perspective on data sharing & protection published in @ojrarediseases article by EURORDIS & @cardiffuni, including recommendations for policymakers & researchers. ow.ly/73PK50v0Uyx

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Virginie Bros-Facer retweetledi

ERDERA@ERDERA_org·31 Oca

It's the 2nd day of the #EJPRD Kick-Off meeting! Already preparing the #RareDiseaseDay 😉 @rarediseaseday #RareDiseases

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Virginie Bros-Facer retweetledi

ERDERA@ERDERA_org·19 Şub

Our first training on Biobanks "ORGANIZING & MAXIMIZING RARE DISEASE BIOLOGICAL SAMPLE DATA IN BIOBANKS" is now up for registration! ejprarediseases.org/index.php/trai… #RareDiseases #EJPRD @Telethonitalia @BBMRIERIC #CharitéBerlin #ISCIII @Hacettepe1967 #UMGdansk @umcg #VilniusUH

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Virginie Bros-Facer retweetledi

ERDERA@ERDERA_org·28 Şub

Launching today: we’ve worked on the Rare Diseases campaign with @MediaplanetUK Read this interview of our very own @DariaJulkowska on how the joint programmes can turbo-charge the research! healthawareness.co.uk/rare-diseases/… #RareDiseases #RareDiseaseDay

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Virginie Bros-Facer retweetledi

ERDERA@ERDERA_org·28 Şub

Today's the day! We asked the EJP RD members to show their rare. Check our mosaic featuring every person involved in the project. Happy #RareDiseaseDay everyone! #ShowYourRare @rarediseaseday #EJPRD #RareDiseases

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Virginie Bros-Facer@VirginieBF31·16 Oca

PARTICIPATING IN THE EUROPEAN PATIENT ADVISORY GROUP FOR ERN-EYE protect-erns.eu/participating-…

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Virginie Bros-Facer retweetledi

EURORDIS-Rare Diseases Europe@eurordis·13 Ara

Do you or someone you know live with a #raredisease? Have you captured a special moment in their life in a photo? Enter your photo to the EURORDIS Photo Award by 7 January #EURORDISAwards2019 blackpearl.eurordis.org/photo-award/ @RareDiseases @RarediseasesSA @RareVoices

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Virginie Bros-Facer@VirginieBF31·14 May

#ECRDVienna

QME

Virginie Bros-Facer@VirginieBF31·22 Şub

I just supported Today is #RareDiseaseDay! on @ThunderclapIt // @rarediseaseday thndr.me/RYcsLu

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Virginie Bros-Facer retweetledi

EURORDIS-Rare Diseases Europe@eurordis·21 Şub

Serge Braun is winner of the EURORDIS Written Media Award 2018 for his book named "We can change the world by selling crepes and balloons" #EURORDISAwards2018 twitter.com/Telethon_Franc…

AFM-Téléthon@Telethon_France

Serge Braun, notre directeur scientifique, a été récompensé hier soir par un @Eurordis Black Pearl Awards, pour son livre "On peut changer le monde en vendant des crêpes et des ballons" ✚ d'infos : bit.ly/2sI58Am #EURORDISAwards2018 #FormatCarré

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Virginie Bros-Facer retweetledi

EURORDIS-Rare Diseases Europe@eurordis·22 Şub

French press conference for @rarediseaseday taking place this morning focusing on the #ShowYourRare campaign. Find out more: rarediseaseday.org/article/show-y… twitter.com/Telethon_Franc…

AFM-Téléthon@Telethon_France

🔔 A 9:30, nous vous donnons RDV pour la conférence de presse spéciale 11e journée internationale des #MaladiesRares (#RareDiseaseDay)! Le mot d’ordre cette année : #ShowYourRare

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Keşfet

@eurordis @raconteur @Ring20UK @EpiCARE_ERN @ojrarediseases @cardiffuni @rarediseaseday @BBMRIERIC