Top Tweets for #ePags
In March we started recording a podcast series in which all #ePags or #patientrepresentatives are requested to participate.
Listen to episode 1, with Simone Louisse #Hart4Onderzoek & Jerker Liljestrand #HCMSwedish Society
#podcast #EU4Health #rarecardiacdisease #HCM #achd
Oggi parliamo del Ruolo dei #pazienti nello sviluppo di
#Patient Experience #Data e nello sviluppo di #registri di #patologia
Insieme a @LucaSangiorgi1 @iaiaraia
@EUPATI_IT @ern_bond #malattierare #ePAGs
Great first day highly interactive between speakers and participants
@jdgiuliano @gulcingumus1
@istsupsan @LUMC_Leiden @EJPRareDiseases @ICORD_RARE
#RareDisease #Registries #FAIRification #ePAGs #ePAGItalia #ERNeu #EURORDIS #UNIAMO @EUPATI_IT #malattierare @ern_reconnet
🤩 @ern_reconnet is happy to be part of the @EJPRareDiseases Training Course organized in collaboration with @istsupsan on "#RareDisease Registries & #FAIRification of data" that started today. 💪Maria Elena from our Coordination Team will be there this week.
#TogethERNReCONNET
🌈 it is amazing to meet our #ERNReCONNET members from all over #Europe at #EULAR2023 n chat with them f2f 🤍 stay tuned, the best has yet to come 💪
#ePAGs #ERNReCONNETePAGS #ERNReCONNETmembers #erns #research #science #ScienceTwitter
Before #weekend starts, sign up
"Intl Summer #School on #RareDisease #Registries & #FAIRification of #data"
Sept 25-29 2023
#Roma @istsupsan #EJPRD
✍️https://t.co/cGHsxwyXnl
ℹ️ https://t.co/UalrCi7ebI
#IRDIRC #EOSC #malattierare #FAIR #ePAGs #EURORDIS #UNIAMO #datastewards
Have you registered for the #EJPRD #Course on
"#RareDisease #Registries & #FAIRification of #data"
Sept 25-29 2023 @istsupsan, #Roma
Don't miss the opportunity❗️
➡️ https://t.co/cGHsxwyXnl
#malattierare #FAIR #patients #ePAGs #EURORDIS #UNIAMO #datastewards #ERNeu #ICORD
Intl Summer School #RareDisease #Registries & #FAIRification of #data #Rome, Sept 25-29 2023 Registration OPEN till May 22👉 https://t.co/HFgcohYQLh Info & Programme https://t.co/0bf4gl11Y4
@istsupsan
@EJPRareDiseases
#ePAGs #ePAGItalia #ERNeu #UNIAMO #EURORDIS
@ClaudioCarta_4
Intl Summer School #RareDisease #Registries & #FAIRification of #data #Rome, Sept 25-29 2023 Registration OPEN till May 22👉 https://t.co/qQgSCdPxP6 Info & Programme https://t.co/afpaoN1ANB
@istsupsan
@EJPRareDiseases
#malattierare #ePAGs #ePAGItalia #ERNeu #UNIAMO #EURORDIS
Intl Summer School #RareDisease #Registries & #FAIRification of #data #Rome, Sept 25-29 2023 Registration OPEN till May 22👉 https://t.co/K79sdNvQdX Info & Programme https://t.co/Y7pxY3h70O
@istsupsan
@EJPRareDiseases
#malattierare #ePAGs #ePAGItalia #ERNeu #UNIAMO #EURORDIS
Intl Summer School #RareDisease #Registries & #FAIRification of #data
#Rome, Sept 25-29 2023
Registration OPEN till May 22👉 https://t.co/zzLpbPWKG8
Info & Programme https://t.co/QNyyKbmOPH
@istsupsan @EJPRareDiseases
#malattierare #ePAGs #ePAGItalia #ERNeu #UNIAMO #EURORDIS
Intl Summer School #RareDisease #Registries & #FAIRification of #data
#Rome, Sept 25-29 2023
Registration OPEN till May 22👉 https://t.co/zzLpbPWKG8
Info & Programme https://t.co/QNyyKbmOPH
@istsupsan @EJPRareDiseases
#malattierare #ePAGs #ePAGItalia #ERNeu #UNIAMO #EURORDIS
@MartaMartamosca, coordinator of @ReCONNET, just stressed that the #ePAGs (patient representatives) are colleagues @DianaMarinello @SaraTalarico2 @eurordis @EU_Health @MinisteroSalute
Attention all patient advocates! Apply now to receive one of the 21 fellowships on offer for the #EJPRD Leadership and Communications Skills training for patient advocates. https://t.co/SVNGYpgPpJ
#EndoERN #EuRRECa #ePAGs #endocrinology #rarediseases #endocrine #healthunion
Great new podcast #EurordisRareonAir from @eurordis
Interesting to hear all about the #ERNs & #ePAGs
We agree it’s important to bring the voices of families to the work of the European Reference Networks (ERNs)
The rare community is #StrongerTogether with #commongoals 🇮🇪 🇪🇺
Expertise should travel, rather than the patient.
In the first episode of our podcast series, Rare on Air, @yann_eurordis discusses the momentous early days of European Reference Networks upon their launch in 2017.
Listen now! https://t.co/QYOG5GsaOK
#EurordisRareOnAir
Join our next webinar on sharing good practices in patient advocacy!
Supported by the Boston Scientific Foundation Europe, our #ePAGs series of webinars aims to help you drive change within the European Reference Networks.
🔗 https://t.co/rxN2mh42Lt
Super effective meeting with #ePAGs, Disease Coordinators and Steering Committee, with wonderful updates on disease groups' work
#ERNReCONNET #ePAGs Jeanette Andersen (chair) and Alain Cornet (speaker) on "What are my key concerns when I am having a #lupus flare?" at the European Lupus Meeting #lupus2022 #lupus100 #diseaseactivity #remission #patientsperspective
A #virtual #platform for #patients ❗
@EJPRareDiseases G.A. 202️⃣2️⃣
#EURORDIS #uniamo #ePAGs
@istsupsan @worldduchenne @Parent_Project @LUMC_Leiden @AScopinaro @iaiaraia @DianaMarinello @gulcingumus1 @CopiadiCla @MariangelaPell4
Did you know we developed disease specific brochures with the help of European Patient Advocacy Groups (EPAGs)
Look here for all the brochures we have: https://t.co/mvmHSCxwKW
Look here for more information about our Epags: https://t.co/LUUU7COAiw
#rarecardiacdiseases #epags
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