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Prikvačeni tweet
16 New #PillsofKnowledge#PoK#videos from the#MediumSizedArteries (MSA) WG’s#vascular#EhlersDanlosSyndrome study day in London now available! Possible thx 2@TheEDSociety#support! Share to#educate medical community on#vEDS: https://vascern.eu/16-new-pills-of-knowledge-pok-videos-from-the-medium-sized-arteries-msa-wgs-vascular-ehlers-danlos-syndrome-study-day-in-london/ …#ERNeu#eHealthpic.twitter.com/0ec8vG78O7
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VASCERN proslijedio/la je Tweet
NEW #ejprd#calls on#training n#support r open 4#ERNs members:#Research Mobility#Fellowship n Research#Training#Workshop https://www.ejprarediseases.org/index.php/training-and-empowerment/ern-trainings/ …@cranio_ern@ERN_RND@ern_reconnet@EpiCARE_ERN@Metab_ERN@TransplantChild@ErnEyeEU@ERNGuardHeart@_ernrita@ERN_RARE_LIVERpic.twitter.com/NBtBT2bhex
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New video in
#English presents the#French#National#RareDisease#Networks - their activities, structure and how they interact with the#EuropeanReferenceNetworks! Example of#ERNeu#integration into national#healthcare system!@FAVAMulti@filfoie@eurordis@EU_Healthhttps://twitter.com/FAVAMulti/status/1225339376172961792 …
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VASCERN proslijedio/la je Tweet
Today in Brussels to discuss guidelines development within ERNs
#ERNEU#erneye#sharecarecure@ErnEyeEUpic.twitter.com/70c7mxGGWh
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VASCERN proslijedio/la je Tweet
Dr Pia Ostergaard opening the meeting - summarising the overall project aims and introducing the team members that will bring it all together
#LymphDreamTeam.Me - discussing all things ICG Lymphography, Dr Haegerling showing us amazing prelim 3D biopsy results@SGUL_Geneticspic.twitter.com/sPaLElwrK7
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VASCERN proslijedio/la je Tweet
Big news: We’re funding 30 patient-led organization to support their launch of
#RareDisease research networks in their search for treatment options#RareAsOnehttps://czi.co/RareAsOneNetwork …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
VASCERN proslijedio/la je Tweet
Customise your Twitter profile picture with the
#RareDiseaseDay Twibbon to show your support for people living with a rare disease around the world >>https://twibbon.com/support/rare-disease-day-2020/twitter …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
VASCERN proslijedio/la je Tweet
Don’t miss the chance to make your voice heard! Have your say on the healthcare you receive for your rare disease via the new
#RareBarometer H-CARE Survey. Survey closes on 29 February: http://tiny.cc/h-care pic.twitter.com/WbawfdWJ0DHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
VASCERN proslijedio/la je Tweet
New opportunity from @EJPRareDiseases
Research mobility #fellowship &#research training workshops for#PhD students/ young medical doctors/ researchers. Learn more here:https://www.ejprarediseases.org/index.php/training-and-empowerment/ern-trainings/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
#VASCERN#newsletter is out!
#upcoming events (#RareDiseaseDay), new#AffiliatedPartner
+
#translations of#patientpathways, 2 new#patientadvocates join#ePAG for#PPL,@LymphaThe#VASCERNSpotlights#HTAD#Research news+ more! https://vascern.eu/?na=archive&email_id=72 …#ERNeu@EU_Healthpic.twitter.com/sE5vqkQZQj
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VASCERN proslijedio/la je Tweet
Results from the latest
#RareBarometer Voices survey -According to#RareDisease patients, the main risks associated with data sharing are: http://ow.ly/T51450ybBeU pic.twitter.com/Wp7OgodpG0
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VASCERN proslijedio/la je Tweet
It is a great pleasure to work with Eline and the patient association
@NLNetwerkHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
February is #MarfanSyndrome#awareness month!
So what better time to share again this great #PoK#video by@judbacke (#HTAD WG Chair)
#Marfan Syndrome -#Diagnosis https://youtu.be/w-rJbF4nnbQ via@YouTube#MarfanVictoryChallenge#ERNeu#RareDiseases@JondeauG@robert_leemaHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
VASCERN proslijedio/la je Tweet
It is February. And February is always a month to help create awareness for
#MarfanSyndrome#MarfanVictoryChallenge#AorticDisease@vEDSCollabo@vascern@Vascupedia_com@VASCevidence@UWVascsurg@ShereneShalhub@keaglemd@JohnRitterPrgm@ThinkAortaUS@AortaSurg@AorticDisorderspic.twitter.com/I8JHIaahEe
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VASCERN proslijedio/la je Tweet
1/3 February is
#MarfanAwarenessMonth and we can't wait to get it going! Here's what you can do: First, download your favorite graphics and use them however you like to tell your story and encourage others to spread the word. http://bit.ly/2ObMhWT#MarfanVictoryChallengepic.twitter.com/c5TkJLoy8p
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VASCERN proslijedio/la je Tweet
¡Ya están aquí los
programas
http://www.marfan.es/es/noticias/ya-estan-aqui-los-programas …
MUCHÍSIMAS GRACIAS
A todos los que hacéis posible este #XXEncuentroSima
Socios, Voluntarios, Monitores, Dra.Montañés, Dra.Sanz, Dra.Marta Cabranes,@jbotet,@MenudosMenudos,@FEDER_ONG
Nos vemos en #Madrid
pic.twitter.com/qp2qtx0Tov
Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Meet Eline Hoogstra, from The Netherlands
@NLNetwerk,#patientadvocate for#Pediatric and#PrimaryLymphedema#PPL in the VASCERN#ePAG! https://vascern.eu/new-epag-patient-advocate-for-pediatric-and-primary-lymphedema-from-the-netherlands/ …#ERNeu#patientinvolvement@eurordis@LymphaThe@ManuelaLdelinfa@Huidfondspic.twitter.com/6XUV56ps2A
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Very important survey results highlight the
#preferences of#RareDisease#Patients when it comes to#datasharing#datacontrol and#participation in#scientific#research!#registries#ERNeuhttps://twitter.com/eurordis/status/1222811872430297088 …
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VASCERN proslijedio/la je Tweet
Each type of
#EhlersDanlossyndrome is defined as a distinct problem in connective tissue: what the body uses to provide strength & elasticity. Connective tissue is found throughout the body, and Ehlers-Danlos syndromes are structural problems.https://buff.ly/2O4Xw5GHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
VASCERN proslijedio/la je Tweet
A patient journey is different for every patient. I am proud to tell mine because I have learned so much, reduced my leg, improved my life, met so many amazing patients, clinicians and advocates and finally happy to be part of the community
#lymphedemapic.twitter.com/oBMZoAvWy9
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We now have an #AffiliatedPartner from#Malta
- Mater Dei Hospital! Welcome to Drs. @MaryanneCaruana and@kevincas0 who will#collaborate with the Heritable Thoracic#AorticDiseases#HTAD and#MSA#vEDS WGs!#Marfan#ERNeu
https://vascern.eu/new-vascern-affiliated-partner-from-malta/ … @judbacke@robert_leemapic.twitter.com/6Jhlc1TlPm
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