Joined November 2018
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- Followers 574
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135 Photos and videos
30 Dec 2024
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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28 Aug 2024
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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20 Aug 2024
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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12 Aug 2024
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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6 Aug 2024
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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22 Jul 2024
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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15 Jul 2024
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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11 Jul 2024
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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8 Jul 2024
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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4 Jul 2024
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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25 Jun 2024
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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20 Jun 2024
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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13 Jun 2024
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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10 Jun 2024
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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3 Jun 2024
Watch the powerfull story of Ruth, chair and epag of our patient network board.....
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30 May 2024
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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23 May 2024
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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16 May 2024
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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