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      • Thematic area 1: Familial Electrical Diseases in Adults and Children
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ERN GUARD-Heart

ERN GUARD-Heart

European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart

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  • ERN GUARD-Heart
    • Missions
    • European Value
    • Target Groups
    • Structure and Governance
    • Expertise
      • Thematic area 1: Familial Electrical Diseases in Adults and Children
      • Thematic area 2: Familial Cardiomyopathies in Adults and Children
      • Thematic area 3: Special Electrophysiology Conditions
      • Thematic area 4: Congenital Heart Diseases in Adults and Children
      • Thematic area 5: Other Rare Cardiac Diseases
    • Full members
      • Belgium
        • Antwerp University Hospital
        • University Hospital Brussels
        • University Hospitals Leuven
      • Croatia
        • University Hospital Centre Zagreb
      • Czech Republic
        • IKEM
        • University Hospital Motol
      • Denmark
        • Aarhus Universitets Hospital
        • Copenhagen University Hospital Rigshospitalet
      • Finland
        • Helsinki University Hospital
      • France
        • Bordeaux University Hospital
        • French consortium
        • Louis Pradel Cardiovascular Hospital
        • Nantes University Hospital
      • Germany
        • Munich Consortium
        • University Hospital Münster
      • Hungary
        • University of Szeged
      • Ireland
        • Mater Misericordiae University Hospital
      • Italy
        • Azienda Ospedaliero Universitaria
        • Istituto Auxologico Italiano IRCCS
        • IRCCS Policlinico San Donato
        • AORN dei Colli/Monaldi Hospital
        • Padua University Hospital
        • Foundation Policlinico San Matteo IRCCS
        • Fondazione Policlinico Universitario A. Gemelli 
        • Bambino Gesù Children’s Hospital
        • Azienda Sanitaria Universitaria Intergrata di Trieste
      • Netherlands
        • Amsterdam University Medical Centres
        • Maastricht UMC+
        • Erasmus MC
        • University Medical Center Utrecht
      • Poland
        • Upper-Silesian Medical Centre
      • Portugal
        • Centro Hospitalar de Lisboa Ocidental
        • CHU de Lisboa Central
        • Centro Hospitalar de São João
      • Romania
        • Emergency Institute for Cardiovascular Diseases
      • Spain
        • Hospital Clínic de Barcelona
        • Vall d’Hebron Hospital
        • Sant Juan de Déu – Barcelona Children’s Hospital
        • Gregorio Marañon
        • University Hospital Puerta de Hierro Majadahonda
        • University Hospital Virgen Arrixaca
        • Complejo Hospitalario Regional Virgen del Rocío
      • Sweden
        • Umeå University Hospital
    • Affiliated partners
      • Associated National Centers
        • Austria: Medical University Innsbruck
        • Austria: Medical University of Vienna
        • Estonia: Tartu University Hospital
        • Lithuania: University of Health Sciences Kaunas
        • Lithuania: Santaros Klinika Vilnius
        • Slovakia: Medical University Bratislava
        • Slovenia-Ljubljana
      • Coordination HUBs
        • Luxembourg: Centre Hospitalier de Luxembourg
        • Malta: Mater Dei Hospital
  • Patients
    • European Patient Advocacy Groups
      • AICARM (IT)
        • Matteo Pinciroli
      • AICCA (IT)
        • Giovanna Campioni
      • AMRYC (FR)
        • Sophie Pierre
      • ARVC-Selbsthilfe (DE)
        • Ruth Biller
      • CardioGen (RO)
        • Carmen Balan
      • Coragem (PT)
        • Inês Pinto Gonçalves
      • Hart4Onderzoek (NL)
        • Simone Louisse
        • Dayenne Zwaagman
      • Herzkinder Fulda / BVHK (DE)
        • Carola Ossenkopp
      • HCM SS (SE)
        • Jerker Liljestrand
        • Lottis Katarina Charlotte Hörting
      • Irish Heart Foundation (IE)
        • Lorraine McGlinchey
      • LMNA Cardiac (NL)
        • Stefan Bassant
      • Petit Coeur de Beurre (FR)
        • Gaelle Marguin
      • SAMS (ES)
        • Ester Costafreda
      • Sydänlapset ja-aikuiset (FI)
        • Katja Laine
      • TSA (UK)
        • Sophie Muir
    • Supporting partners
      • ACMRC (IT)
      • CAKO (CZ)
        • Kristýna Čillíková
      • CRY (UK)
        • Steven Cox
      • FAST Bulgaria
      • Hjärtebarnsfonden (SE)
      • Hjerteforeningen (DK)
        • Lisbeth Vestergaard Andersen
      • Mended Hearts Europe (CH)
      • PAH (NL)
        • Judith van de Meerakker
      • Riksförbundet HjärtLung (SE)
        • Catrine Jacobsson
      • Srdíčkáři (CZ)
      • SZÍVSN
        • Péter Kovács
        • Mrs. Bernáth-Lukács Zsuzsa
    • Disease-specific Brochures
      • Disease-specific Brochures – CZ
      • Disease-specific Brochures – DK
      • Disease-specific Brochures – NL
      • Disease-specific Brochures – EN
      • Disease-specific Brochures – ES
      • Disease-specific Brochures – FI
      • Disease-specific Brochures – FR
      • Disease-specific Brochures – DE
      • Disease-specific Brochures – HU
      • Disease-specific Brochures – IT
      • Disease-specific Brochures – LT
      • Disease-specific Brochures – PT
      • Disease-specific Brochures – RO
      • Disease-specific Brochures – SI
      • Disease-specific Brochures – SE
      • Disease-specific Brochures – UA
    • Laypersons language
      • Electrical heart diseases
      • Cardiomyopathies
      • Specific conditions in children
      • Congenital heart diseases
      • Other rare cardiac diseases
      • General/Varia
      • Guidelines & Consensus statements
    • Topic Meetings
      • Brugada Syndrome – 25 Mei 2024
      • ARVC meeting – Munich, Germany
      • Cardiogen Bordeaux France
      • COVID-vaccination Brugada syndrome
      • CPVT meeting – Amsterdam, The Netherlands
      • Genetic cardiomyopathies – Bucharest, Romania
      • LQTS meeting – Amsterdam, The Netherlands
      • Meeting Brugada Syndrome
      • Patient meeting Helsinki
      • PLN meeting Murcia
    • ePAG Podcast
  • Experts
    • Exchange Programme 2024-2027
    • 5 years evaluation process
    • Educational videos
    • Forms
    • Podcast series
    • Summerschool
    • Tools
    • Webinar series
  • Registries
    • Condition-Specific Registries
    • Heart-Core Registry
  • Events
    • Future Events
    • Previous Events
      • Launch Cardiac PATROL app
  • About
    • Project Management Office
    • Contact
    • COVID-19
    • Newsletters
      • Subscribe newsletter
      • Unsubscribe newsletter
    • Links
    • For members

Category: ERN News

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Who are our ePAG’s?Céline’s Journey: Perseverance, Resilience, and Hope

Céline’s Journey: Perseverance, Resilience, and Hope Our Family’s Story and Commitment to AMRYC (Association for Hereditary Cardiac Rhythm Disorders) Introduction: Presenting Céline and Our Family Context I’m Sophie Pierre, vice-president of AMRYC (France) which aims at supporting all patients suffering READ MORE

January 26, 2026 mariERN News
© 2023 ERN GUARD-Heart
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