Tweet Teratas untuk #pillsofknowledge
New publication in @ojrarediseases on the #VASCERN #eHealth Working Group's efforts and #eHealth tools developped for #patients with #rarediseases: #VASCERNapp #mobileapp #pillsofknowledge #educational videos +more! ππ Find the full article here: https://t.co/zFgTeCEh28 #ERNeu
The first session of the #Pediatric and #PrimaryLymphedema WG during the #VASCERNDays2020 was a very productive meeting! On todayβs agenda: #PillsofKnowledge, #webinars, #clinical outcome measures + so much more!π€ #ERNeu @Malou_vanZanten @DevoogdtNele @LymphaThe @ManuelaLdelinfa
The #RareDisease WG Chairs are talking progress of work packages + outputs at #VASCERNDays2020: for #HHT Claire Shovlin, #HTAD @judbacke, #MSA #vEDS @robert_leema, #PPL Robert Damstra and #VASCA @MiikkaVikkula! #PatientPathways #PillsofKnowledge #research #registry #ERNeu
The #Pediatric and #PrimaryLymphedema WG have started their 2-day online meeting! On today's agenda: creation of #PillsofKnowledge #videos that will feature PPL #ePAG #patient #advocates, #VASCERNapp, #Registry + #CPMS #case discussions! More to come tomorrow!π#ERNeu #lymphedema
ποΈ NEW EPISODE! ποΈ
#12
A CONFERENCE ON THE FUTURE OF EUROPE: upcoming process in the #vdLCommission agenda with the potential to bring about EU reform. 1st episode in our #pillsofknowledge series - where we explain concepts of EU affairs in shorter episodes #btb
The first #VascularAnomalies working group meeting of 2020 is currently underway! @MiikkaVikkula Last week they released 3 new #PillsofKnowledge videos, produced by @HevasNederland Check out the first on #lymphaticmalformations here: https://t.co/mwuIxI9QJV via @YouTube #ERNeu
New year = 3 new #PillsofKnowledge #PoK videos for #patients on #lymphatic #malformations and #KlippelTrenaunaysyndrome (#KTS)! πCreated by @HevasNederland + revised/validated by the #VascularAnomalies WG! β‘: https://t.co/OCIkV7S7ka #eHealth #treatment #elearning #ERNeu
The #Medium Sized #Arteries #vEDS group, Chaired by @robert_leema, starting their afternoon session at #VASCERNDays2019 talking about their 16 #pillsofknowledge and future possible #webinars and/or #tweetorials! #ERNeu @IngridvdLaar @CharissaFrank @jhgrunert @RaffaellaGaeta2
The #RareDisease WG #Chairs, Ulrich Sure (for #HHT), @judbacke (#HTAD), @robert_leema (#MSA), Robert Damstra (#PPL) and @MiikkaVikkula (#VASCA), are now talking #implementation of #workpackages! #patientpathways #pillsofknowledge #ERNeu
π£ 16 New #PillsofKnowledge #PoK #videos from the #MediumSizedArteries (MSA) WGβs #vascular #EhlersDanlosSyndrome study day in London now available! Possible thx 2 @TheEDSociety #support! Share to #educate medical community on #vEDS: https://t.co/mGqGyakQns #ERNeu #eHealth
The #Heritable #ThoracicAortic Diseases (#HTAD) WG, chaired by @judbacke, held their first meeting after #summer break on Monday! Evaluation of #patientpathway, #registry project, #PillsofKnowledge and upcoming #ESCCongress were all discussed! #ERNeu @IngridvdLaar @liseurordis
The #HereditaryHaemorrhagic #Telangiectasia #HHT WG had their monthly meeting this morning! Lots discussed: novel oral #anticoagulant paper + topics selected for new #patientpathways, #PillsofKnowledge and #ClinicalPractice #Statements (e.g. #Pregnancy in HHT)! @HHTOnlus #ERNeu
Last night the #Pediatric and #PrimaryLymphedema working group held their monthly virtual meeting! Discussed new #PillsofKnowledge to be created + translation of Do'sandDon'ts! Looking for #patientadvocates #ePAG for #PPL! Contact @eurordis if interested! @BeLymph @NLNetwerk
The #VASCERN #YouTube channel now has over 100 subscribers!!! #Thanks!!! ππ If you haven't already, #subscribe to catch our new #PillsofKnowledge #videos (w/ subtitles in #EU languages) #MarfanSyndrome, #HTAD #HHT, #VascularAnomalies #vEDS, #PPL #eLearning #ERNeu #ehealth
13 #NEW #PillsofKnowledge videos published on our #YouTube channel! #eHealth Videos on #HHT, #HTAD #MarfanSyndrome, #PPL + #VascularAnomalies for #patients #healthcare professionals + general public! Read here: https://t.co/Xy8h937heX #ERNeu #ShareCareCure @EU_Health @eurordis
First VASCERN #RareDisease WG meeting of 2019 started this evening with the #MediumSizedArteries WG, Chaired by @robert_leema! Discussing #vEDS #patient pathway, clinical diagnosis items in #children and soon to be released #PillsofKnowledge! @judbacke @IngridvdLaar
Very proud of our members @nataschaassies and Dr. Robert Damstra as they present #success factors and #challenges of #Patient-#Healthcare #partnerships in #ERNs w/ example of work #accomplished by #PPL WG (e.g. #PillsofKnowledge video)! #ERNeu @NLNetwerk #ePAG @eurordis #ehealth
Picture from the set of #VASCERNdays2018 last week, where filming of 13 new #PillsofKnowledge took place! Looking forward to their #release! All 5 RDWGs participated, PoKs for both #patients and #doctors! #ERNeu #elearning #eHealth #HHT #HTAD #Marfan #PPL #VascularAnomalies #vEDS
The 5 #raredisease WG Chairs reported their outcomes and achievements at #VASCERNdays2018 and conclusion: big #success! #pillsofknowledge #patientpathways #collaborations #outcomemeasures #scientificpublications @EU_Health #patientcare @robert_leema @judbacke @MiikkaVikkula
#eHealth WG @RaffaellaGaeta2 presenting our #YouTube Channel progress since 1 year and the videos with most viewers! Great results for our #PillsofKnowledge #ShareCareCure #ERNeu #communication #socialmedia
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