ERN GUARD-Heart

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)

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

Listen to episode 7: Sophie Muir (Timothy Syndrome Alliance) and Gaelle Marguin (Petit Cœur de Beurre) guardheart.ern-net.eu/.../epag-podca… #podcast #EU4Health #ernguardheart #rarecardiacdisease #patientexperience

Listen to episode 6: Ester Costafreda (SAMS) and Carmen Balan (Romania Asociației CardioGen) guardheart.ern-net.eu/.../epag-podca… #podcast #EU4Health #ernguardheart #rarecardiacdisease #patientexperience #patientrepresentative

Hereby you can watch the recording 19; Innovative therapy in HCM youtu.be/PvkxWBx2CJw?si… #webinar #EU4Health #EuropeanUnion #guardheart #ernguardheart #HCM #cardiomyopathy #hypertrophiccardiomyopathy

Hereby you can watch the recording 18: Arrhythmias and ablations in very small patients youtu.be/90jtuZizhvA?si… #Webiner #EU4Health #europe #guardheart #ernguardheart #ablations #Pediatrics #arrhythmias

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

Hereby you can watch the recording 17 Pediatric ARVC: diagnosis, family screening, phenotype and outcome youtu.be/-F7w2hc6bNA?si… #Webinar #EU4Health #europe #guardheart #ernguardheart #ARVC #pediatric #screening #phenotyping #outcomes

Listen to episode 2, Inês Pinto Gonçalves (Associação Coragem) and Giovanna Campioni (AICCA) guardheart.ern-net.eu/.../epag-podca… #podcast #EU4Health #ernguardheart #rarecardiacdisease #achd

Hereby you can watch the recording 16: Cardiac amyloidosis: from diagnosis to management youtu.be/w_eKZh-wkqg?si… #webinar #EU4Health #europe #guardheart #ernguardheart #CardiacAmyloidosis #diagnosis #Management

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

Listen to Episode 38: Hospital Madrid – Maria Espinosa & Ana Fernández Avila (Duration:13.45) guardheart.ern-net.eu/podcast/38-hos… #podcast #ernguardheart #EU4Health #europe #interview #hospital #Madrid

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

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

Watch the powerfull story of Ruth, chair and epag of our patient network board.....

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

Listen to Episode 35: Hospital Zagreb – Davor Milicic & Ivo Planinc (Duration:15:11) guardheart.ern-net.eu/podcast/35-hos… #podcast #ernguardheart #EU4Health #europe #interviews #hospital #hospitalzagreb