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Step by step we grow: 


Let us celebrate our 900 #followers on Twitter - and stay connected with#RareDiseases#ERNeu#ShareCareCure#PatientsInvolvementpic.twitter.com/b2zJWh54cb -
Today in Brussels to discuss guidelines development within ERNs
#ERNEU#erneye#sharecarecure@ErnEyeEUpic.twitter.com/70c7mxGGWh
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"Today on
#WorldCancerDay
we begin a common path that will lead to Europes' beating cancer action plan" #ERNs on#RareCancers are key pieces on this path, so much to do together!@ERN_EURACAN#ERNGenturis#ERNPaedCan#EuroBloodNet#EUCancerPlan#EuropeanReferenceNetworks#ERNeu pic.twitter.com/SfhZ4MyKDQ -
Great!!

#EuroBloodNet is also present at the#ERNeu#ClinicalPracticeGuidelines meeting! It will be a fruitful day for cross-ERNs discussion on guidelines & Clinical decision support tools development!#EuropeanReferenceNetworks#RareDiseases#BestPracticeshttps://twitter.com/TransplantChild/status/1225357519046037504 …
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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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#ERNReCONNET at@EU_Health to present our approach on#ClinicalPracticeGuidelines, results achieved so far and activities planned for the next years#Guidelines#CPGs#ERNs#ERNEU#ShareCareCure#PatientsInvolvementpic.twitter.com/QMeVVGa2DT
Prikaži ovu nit -
Photo with participants of the program, mentors and the President of the Italian
#ParoxysmalNocturnalHemoglobinuria patient association!#EuroBloodNet#Preceptorship#PNH#AplasticAnemia#RareHematologicalDiseases Thanks to all!#ERNeu https://twitter.com/ERNEuroBloodNet/status/1225315972103516160 …
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Third day of
#EuroBloodNet Preceptorship on#AplasticAnaemia and#ParoxysmalNocturnalHemoglobinuria at AOU Federico II (Naples) ! Today lesson on Hereditary Anemias by@IolasconL, Dr. Russo and Dr. Andolfo.
#PNH#AA#RareHematologicalDiseases#ERNeu https://twitter.com/IolasconL/status/1225039334270783488 …
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#EuroBloodNet is present at the#EUCancerPlan event where the Europe's beating#Cancer Plan is being presented on the occassion of#WorldCancerDay
. #EUCancerPlan aims to provide answers where lacking, while proposing actions at every key stage of the disease#ERNeu#RareCancerspic.twitter.com/15qrptqvrM
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#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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2nd
#EuroBloodNet#Preceptorship for#AplasticAnemia &#ParoxysmalNocturnalHemoglobinuria :"from the bench to the bedside" started yestderday! Hosting AOU Federico II-Naples and led by Prof. Antonio Risitano. Welcome to the participants!!#PNH#AA#ERNeu#RareDiseases@IolasconLpic.twitter.com/LV2WtLMLEa
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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_leema -
"The majority of continuing education events I have ever attended were much more theoretically orientated.
#EuroBloodNet#perceptorship was totally different" Read participants' testimonies of the first program on#PNH and#AA !
https://www.eurobloodnet.eu/news/89/the-majority-of-continuing-education-events-i-have-ever-attended-were-much-more-theoretically-orientated-eurobloodnet-perceptorship-was-totally-different-read-the-testimonies-of-the-first-pnh-and-aa-program … @Filiere_MaRIH#ERNeu pic.twitter.com/rNmKuIDPI0
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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#ERNeu https://twitter.com/eurordis/status/1222811872430297088 …
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Interesante
#ReuniónEnfermedadesRaras organizada hoy por@SEDISA_NET en@HospitalUVRocio. Muy relevante el papel del SSPA en este ámbito: la evaluación técnica de#CSUR del SNS y Redes Europeas de Referencias#ERNeu se lleva desde Andalucía (@calidadACSA)https://twitter.com/SEDISA_NET/status/1222809039295385600 …
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#EC website (#Europa) now hosts a searchable interface with details about#EuropeanReferenceNetworks, including multi-lingual factsheets about#ERNeu and locations of members and partner centres. Check it at: https://ec.europa.eu/health/ern/networks_en …#RareDiseasespic.twitter.com/Z0M3UODTr6
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16th International SPDM Symposium | 19-20 March 2020 The 16th International SPDM Symposium will take place at the Lux Lisboa Park Hotel, Libon. Preliminary Programme https://metab.ern-net.eu/16th-international-spdm-symposium/ …
#europe#ERNeu#endorsed#SPDM -
The #EpiCARE Twitter account has just reached#1000followers
Huge THANK YOU for your ongoing support and interest in what we do. Our focus will remain the same: #epilepsy &#raredisease sprinkled with some#research. Thank you for being here
#ShareCareCure#ERNEu pic.twitter.com/PvlnCn7i2D
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