@ERNGuardHeart

ERN GUARD-Heart is part of the European Reference Networks for rare or low-prevalence disease and focuses on rare and complex diseases of the heart. @AMC_nl

 Amsterdam, The Netherlands
guardheart.ern-net.eu/
Joined November 2018
  • Tweets197
  • Following203
  • Followers573
135Media
Hereby the sixth newsletter of 2024, with topics: - ERICA Conference in Udine - Next board-meeting 2025 - Online: ERDERA website! - ERNs evaluation results report - Reminder: HCP Performance indicators, 31 December 2024! - Latest ERN GUARD-Heart Publication (s)
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Hereby the fourth newsletter of 2024, with topics: Conect4children.org Agenda boardmeeting Who are our ePAG’s, Inês Pinto Gonçalves-Portugal LMNA PRIORITY project awarded prestigious Leducq grant Upcoming Webinar Latest Publications #guardheart #europeannetworks #EU4Health
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Listen to episode 7: Sophie Muir (Timothy Syndrome Alliance) and Gaelle Marguin (Petit Cœur de Beurre) guardheart.ern-net.eu/.../ep… #podcast #EU4Health #ernguardheart #rarecardiacdisease #patientexperience
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Listen to episode 6: Ester Costafreda (SAMS) and Carmen Balan (Romania Asociației CardioGen) guardheart.ern-net.eu/.../ep… #podcast #EU4Health #ernguardheart #rarecardiacdisease #patientexperience #patientrepresentative
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Hereby you can watch the recording 19; Innovative therapy in HCM youtu.be/PvkxWBx2CJw?si=T3Nj… #webinar #EU4Health #EuropeanUnion #guardheart #ernguardheart #HCM #cardiomyopathy #hypertrophiccardiomyopathy
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Hereby you can watch the recording 18: Arrhythmias and ablations in very small patients youtu.be/90jtuZizhvA?si=j85r… #Webiner #EU4Health #europe #guardheart #ernguardheart #ablations #Pediatrics #arrhythmias
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Listen to episode 3, Lorraine McGlinchey (Irish Heart Foundation) and Sophie Pierre (AMRYC - Association des Maladies Héréditaires du Rythme Cardiaque) lnkd.in/e6Qwry6A #podcast #EU4Health #ernguardheart #rarecardiacdisease
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Hereby you can watch the recording 17 Pediatric ARVC: diagnosis, family screening, phenotype and outcome youtu.be/-F7w2hc6bNA?si=6a5f… #Webinar #EU4Health #europe #guardheart #ernguardheart #ARVC #pediatric #screening #phenotyping #outcomes
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Listen to episode 2, Inês Pinto Gonçalves (Associação Coragem) and Giovanna Campioni (AICCA) guardheart.ern-net.eu/.../ep… #podcast #EU4Health #ernguardheart #rarecardiacdisease #achd
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Hereby you can watch the recording 16: Cardiac amyloidosis: from diagnosis to management youtu.be/w_eKZh-wkqg?si=NgVo… #webinar #EU4Health #europe #guardheart #ernguardheart #CardiacAmyloidosis #diagnosis #Management
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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
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Listen to Episode 38: Hospital Madrid – Maria Espinosa & Ana Fernández Avila (Duration:13.45) guardheart.ern-net.eu/podcas… #podcast #ernguardheart #EU4Health #europe #interview #hospital #Madrid
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Hereby our latest newsletter: Cardiomyopathy Awareness Save The Date: board meeting Joint action on Integration of ERNs into National Healthcare systems JARDIN Who are our ePAG’s with Katja Laine CPMS 2.0 Desktop version Latest publications #europeannetworks #EU4Health
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Each week one of our member-centres is in the spotlight with an interview of the main representative and one of her/his junior colleagues. Episode 37: Hospital Münster – Eric Schulze Bahr & Gerhard Diller lnkd.in/etFAPX-a
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Watch the powerfull story of Ruth, chair and epag of our patient network board.....
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Listen to Episode 36: Hospital Fondazione Policlinico Universitario Agostino Gemelli Rome – Massimo Massetti & Maria Grandinetti (Duration:17:41) #podcast #ernguardheart #EU4Health #europe #interviews #hospital #hospitalrome
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Listen to Episode 35: Hospital Zagreb – Davor Milicic & Ivo Planinc (Duration:15:11) guardheart.ern-net.eu/podcas… #podcast #ernguardheart #EU4Health #europe #interviews #hospital #hospitalzagreb
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Please, find attached the flyer for the next ERN Webinar, subscribe via the link and add it to your agenda. Register now to receive the link: lnkd.in/e74Z_x6q #webinar #HCM #RareCardiacDiseases #Therapy #ErasmusMc #puertadehierromajadahonda #hopitalpitiesalpetriere
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