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Funded by an IRDiRC member = 
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Registries and Biobanks
GERMANY
Baden-Württemberg
ULM
Biobank of Cardiomyopathies Ulm
Universitätsklinikum Ulm am Oberen Eselsberg
Klinik für Innere Medizin II
GERMANY
Bayern
WÜRZBURG
Biobank of the German Competence Network of Heart Failure
Zentrum Innere Medizin (ZIM)
Medizinische Klinik und Poliklinik I - Kardiologie
GERMANY
Berlin
BERLIN
Mykke : German registry for children and adolescents with myocarditis
Kompetenznetz Angeborene Herzfehler
Nationales Register für angeborene Herzfehler e. V.
IRELAND
County Dublin
DUBLIN
Sudden Cardiac Death in the Young Registry
Mater Misericordiae Hospital
Heart House
ITALY
CAMPANIA
NAPOLI
Naples Human Mutation Gene Biobank
AOU Università degli Studi della Campania "Luigi Vanvitelli" - Centro storico
Servizio di Cardiomiologia e Genetica Medica
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases
FRANCE
ILE-DE-FRANCE
PARIS
French National Registry for Rare Diseases (BNDMR)
AP-HP Campus Picpus - Département WIND (Web Innovation Données)
Banque Nationale de Données Maladies Rares (BNDMR)
FRANCE
ILE-DE-FRANCE
PARIS
French registry for right arrythmogenic ventricular dysplasia (ARVC/D)
APHP.Sorbonne Université, Hôpital de la Pitié-Salpêtrière
Départements de génétique et de cardiologie - Centre de référence des maladies cardiaques héréditaires
ITALY
LOMBARDIA
PAVIA
Database "Gene connection for the hearth: Registry of mutations"
Istituti Clinici Scientifici Maugeri
Servizio di Cardiologia Molecolare
ITALY
VENETO
PADOVA
Arrhythmogenic right ventricular cardiomyopathy/dysplasia: clinical registry and database, evaluation of therapies
Policlinico Universitario di Padova
U.O.C. Patologia Cardiovascolare - Dipartimento di Scienze Cardiologiche, Toraciche e Vascolari
ITALY
VENETO
PADOVA
Arrhythmogenic right ventricular cardiomyopathy/dysplasia: biobank of DNA and tissue samples
Policlinico Universitario di Padova
U.O.C. Patologia Cardiovascolare - Dipartimento di Scienze Cardiologiche, Toraciche e Vascolari
NETHERLANDS
Noord-Holland
AMSTERDAM
ERN [GUARD-Heart] - The Heart-Core Registry: a Gateway to Uncommon and Rare Diseases of the Heart
Amsterdam UMC, locatie AMC
Afdeling Cardiologie
SPAIN
Andalucía
SEVILLA
Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Dirección General de Calidad, Investigación y Gestión del Conocimiento
SPAIN
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria
SPAIN
Baleares
PALMA DE MALLORCA
Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Servicio de Epidemiología
SPAIN
Baleares
PALMA DE MALLORCA
Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Dirección General de Salud Pública y Consumo
SPAIN
Cantabria
SANTANDER
Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
Gobierno de Cantabria. Consejería de Sanidad y Servicios Sociales
Servicio de Atención Sanitaria
SPAIN
Comunidad Valenciana
VALENCIA
SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras
SPAIN
Extremadura
MÉRIDA
Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeño de Salud
Subdirector de Epidemiología
SPAIN
Galicia
SANTIAGO DE COMPOSTELA
RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial
SPAIN
Madrid
MADRID
SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Subdirección de Promoción y Prevención de la Salud
Subdirección de Promoción y Prevención de la Salud
SPAIN
Madrid
MADRID
ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SPAIN
Murcia
MURCIA
SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
Región de Murcia. Consejería de Sanidad y Política Social
Servicio de Planificación y Financiación Sanitaria
SPAIN
Navarra
PAMPLONA
Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles
SWITZERLAND
Suisse Alémanique
BERN
Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
GERMANY
Niedersachsen
WOLFSBURG
INVM (Isolated Noncompaction of Ventricular Myocardium) registry
Klinikum der Stadt Wolfsburg
Medizinische Klinik I
FRANCE
ILE-DE-FRANCE
PARIS
UMD DMD (Dystrophin) mutations database
CHU Paris Centre - Hôpital Cochin, Site Cochin
Service de génétique et biologie moléculaires
FRANCE
ILE-DE-FRANCE
PARIS
Registre de mutations d'UMD LMNA (Lamin A/C)
Institut de Myologie - Hôpital Pitié-Salpêtrière
Centre de Recherche en Myologie
FRANCE
OCCITANIE
MONTPELLIER
UMD DMD (Dystrophin) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire
GERMANY
Nordrhein-Westfalen
MÜNSTER
Neuro-Heart-Registry: Registry for patients with heart involment in neurovascular diseases
Universitätsklinikum Münster
Herz-MRT-Zentrum
SPAIN
Cataluña
BARCELONA
NMD-ES: Mitochondrial Diseases Registry
Hospital de la Santa Creu i Sant Pau
Servicio de Neurología
SPAIN
Cataluña
ESPLUGUES DE LLOBREGAT
NMD-ES: Mitochondrial Diseases Registry
Hospital Sant Joan de Déu Barcelona
Unidad de Enfermedades Metabólicas Congénitas
GERMANY
Baden-Württemberg
FREIBURG
Hilda biobank for children at the University Medical Center Freiburg - diagnostic and research on biomaterials of children and adolescents
Zentrum für Kinder- und Jugendmedizin Freiburg
Klinik für Pädiatrische Hämatologie und Onkologie
ITALY
LIGURIA
GENOVA
Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche
ITALY
SICILIA
MESSINA
Transthyretin amyloid neuropathy (TTR-FAP) italian registry
A.O.U. Policlinico "G. Martino"
Centro Clinico Nemo Sud - Centro ad alta specializzazione per le malattie neuromuscolari
NETHERLANDS
Zuid-Holland
ROTTERDAM
ENCORE Biobank for Neurodevelopmental Disorders (blood/saliva/skin biopsies)
Erasmus MC - Erasmus Medisch Centrum
Afdeling Neurowetenschappen
SPAIN
Castilla - León
SALAMANCA
National DNA Bank: Rare diseases sample collection
Centro de Investigación del Cáncer (USAL-CSIC)
Banco Nacional de ADN
SPAIN
Cataluña
BARCELONA
EUROMAC: Registry of patients affected by McArdle Disease
Vall d'Hebron Institut de Recerca VHIR
Grupo de investigación en patología neuromuscular y mitocondrial
SWEDEN
Region Västerbotten
UMEÅ
Svenska FAP-registret
University Hospital of Umeå
Department of Medicine
SWITZERLAND
Suisse Alémanique
BASEL
SACHER: Swiss Adult Congenital HEart disease Registry
Universitätsspital Basel
Cardiology Department
UNITED KINGDOM
Greater Manchester
MANCHESTER
CCRN 2421 (Noonan/RASopathy patients): A registry study to characterize genetic and pathway biomarkers in Noonan syndrome and other RASopathy patients - UK
St Mary's Hospital
Manchester Cente for Genomic Medicine
Networks of registries and biobanks
SPAIN
Madrid
MADRID