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Funded by an IRDiRC member = 
Member of a ERN = 
Registries and Biobanks
SWEDEN
Region Skåne
LUND
LIG4base: Mutation registry for LIG4 syndrome
Lunds Universitet
Department of Experimental Medical Science
GERMANY
Baden-Württemberg
HEIDELBERG
National Cancer-predisposing syndrome registry
Deutsches Krebsforschungszentrum
KITZ - Hopp-Kindertumorzentrum Heidelberg
GERMANY
Niedersachsen
HANNOVER
National Cancer-predisposing syndrome registry
Medizinische Hochschule Hannover
Klinik für Pädiatrische Hämatologie und Onkologie
ITALY
TOSCANA
SIENA
Genetic Biobank of Siena
Azienda Ospedaliero Universitaria Senese - Policlinico Santa Maria alle Scotte
U.O.C. di Genetica Medica
PORTUGAL
CENTRO
COIMBRA
Central regional cancer patient registry
Instituto Português de Oncologia de Coimbra Francisco Gentil, EPE
Registo Oncológico Regional - Zona Centro
PORTUGAL
ILHAS
AÇORES
Açores regional cancer patient registry (RORA)
Centro de Oncologia dos Açores Prof Doutor José Conde
Registo Oncológico Regional dos Açores
PORTUGAL
NORTE
PORTO
North regional cancer registry (RORENO)
Instituto Português de Oncologia do Porto Francisco Gentil, EPE
Registo Oncológico Regional do Norte
AUSTRIA
TIROL
INNSBRUCK
Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck
BELGIUM
ANTWERPEN
ANTWERPEN
Collection of FRA12A carrier DNA samples
University of Antwerp - UA, Campus Drie Eiken
Medical Genetics Unit
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
CRRD: Central Registry of Rare Diseases
Sciensano
Health Services Research - Rare Diseases
ESTONIA
Tartu
TARTU
Biobank of the Estonian Genome Centre
Institute of Genomics of University of Tartu
The Estonian Genome Centre
FRANCE
GRAND-EST
ILLKIRCH-GRAFFENSTADEN
RaDiCo-GenIDA: International social network for data collection on the natural history of rare monogenic forms of intellectual disabilities
Institut de génétique et de biologie moléculaire et cellulaire - IGBMC
Département Médecine translationnelle et neurogénétique
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
ERN [ITHACA] - ILIAD Rare Diseases patient registry: an International Library of Intellectual disability and Anomalies of Development
CHU Paris - Hôpital Robert Debré
UF de Génétique clinique
ITALY
LAZIO
ROMA
RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare
ITALY
LIGURIA
GENOVA
Telethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche
ITALY
LIGURIA
GENOVA
Genetic Biobank of the Human Genetics Laboratory (BGU-IGG)
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O.C. Laboratorio di Genetica Umana
ITALY
TOSCANA
PISA
Tuscan Registry of Rare Diseases
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Fondazione Toscana Gabriele Monasterio
ITALY
VENETO
PADOVA
Rare Diseases Registry - Veneto Region
Azienda Ospedaliera di Padova
Coordinamento Malattie Rare Regione del Veneto
KOREA, REPUBLIC OF
KOREA, REPUBLIC OF
SEOUL
Korean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory
MOROCCO
Rabat
RABAT
Moroccan National Genetic Database
Institut National d'Hygiène
Département de génétique médicale
NETHERLANDS
Limburg
MAASTRICHT
Biobank Intellectual Disability and Multiple Congenital Anomalies (DNA)
Maastricht UMC+
Afdeling Klinische Genetica
NETHERLANDS
Limburg
MAASTRICHT
Biobank Intellectual Disability and Multiple Congenital Anomalies (DNA)
Maastricht UMC+
Biobank Klinische Genetica Maastricht
NORWAY
Østlandet
OSLO
Norwegian registry on rare disorders
Oslo University Hospital, Ullevaal
Norsk register for sjeldne diagnoser
SPAIN
Andalucía
SEVILLA
Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Subdirección Técnica Asesora de Gestión de la Información
SPAIN
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria
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)
Generalitat Valenciana. Conselleria de Sanitat Universal i Salut Pública
Servicio de Estudios Epidemiológicos y Vigilancia de Enfermedades No Transmisibles
SPAIN
Comunidad Valenciana
VALENCIA
CIBERER Biobank (Biobank of rare diseases)
IIS La Fe - Instituto de Investigación Sanitaria La Fe
Grupo de investigación en biomedicina molecular, celular y genómica
SPAIN
Comunidad Valenciana
VALENCIA
CIBERER Biobank (Biobank of rare diseases)
INCLIVA - Facultad de Medicina de la Universidad de Valencia
Grupo de investigación en fisiopatología celular y orgánica del estrés oxidativo
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 Atención Hospitalaria
SPAIN
Madrid
MADRID
ERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil
SPAIN
Madrid
MADRID
BioNER: Biobank of the Institute of Rare Diseases Research/Institute of Health Carlos III
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SPAIN
Madrid
MADRID
RePER: Rare Diseases Patient Registry
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
RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra
Observatorio de la Salud Comunitaria
SPAIN
País Vasco
BARAKALDO
Basque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco
SPAIN
País Vasco
VITORIA-GASTEIZ
Rare Diseases Registry of the Basque Country
Gobierno Vasco. Departamento de Salud
Registro de Enfermedades Raras de la Comunidad Autónoma de Euskadi
UNITED KINGDOM
Cambridgeshire
CAMBRIDGE
UK10K RARE FIND - Familial Intellectual Disability variant database
Addenbrooke's Hospital
Familial Gastric Cancer - Addenbrookes
UNITED KINGDOM
Cambridgeshire
CAMBRIDGE
National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
Public Health England (PHE)
NCARDRS
UNITED KINGDOM
Cambridgeshire
CAMBRIDGE
UK10K RARE FIND - Familial Intellectual Disability variant database
Wellcome Trust/MRC Building
Cambridge Institute for Medical Research
UNITED STATES
South Dakota
SIOUX FALLS
CORDS Registry: Coordination of Rare Diseases at Sanford Registry
Sanford Research
Standford Research
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Belgian registry of primary immunodeficiencies - contribution to the ESID registry
Cliniques Universitaires de Bruxelles - Hôpital Erasme
Unité de Traitment des Immunodéficiences
BELGIUM
OOST-VLAANDEREN
GENT
Belgian registry of primary immunodeficiencies - contribution to the ESID registry
Ghent University Hospital - UZ Gent
Centrum voor primaire immuunstoornissen - UZ Gent (CPIG)
BELGIUM
OOST-VLAANDEREN
GENT
A biobank of patients with Primary Immune Deficiencies (PID)
PID research lab (PIRL), UZ Gent - MRBII - Entrance 38
Center for Primary Immunodeficiencies Ghent, Jeffrey Modell Foundation diagnostic and research center
BELGIUM
VLAAMS BRABANT
LEUVEN
Belgian registry of primary immunodeficiencies - contribution to the ESID registry
UZ Leuven - Campus Gasthuisberg
Centre for Rare Immune Deficiency, Autoimmune and Autoinflammatory Diseases - UZ Leuven
BULGARIA
South-West region
SOFIA
National registry of patients with primary immunodeficiencies (PID) in Bulgaria
Alexandrovska University Hospital
FRANCE
ILE-DE-FRANCE
PARIS
SCETIDE - Stem CEll Transplant for primary Immune Deficiencies in Europe
Hôpital Necker-Enfants Malades
Registre européen des greffes de moelle osseuse pour immunodéficience primaire
GERMANY
Baden-Württemberg
FREIBURG
PID-NET: German National Registry for Primary Immunodeficiencies (PID) - contributes to the ESID registry
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz
GERMANY
Baden-Württemberg
FREIBURG
PID-NET: German National Registry for Primary Immunodeficiencies (PID) - contributes to the ESID registry
CCI am Universitätsklinikum Freiburg
ESID-Registry
GERMANY
Niedersachsen
GÖTTINGEN
ESNEK - Rare paediatric neurological disease registry Germany
Universitätsmedizin Göttingen
Geschäftsstelle der ESNEK
IRELAND
County Dublin
DUBLIN
National Severe Immunodeficiency Registry - contributes to ESID registry
St James's Hospital
Department of Immunology
ITALY
LIGURIA
GENOVA
ERN [RITA] - MERITA: A METADATA REGISTRY FOR THE ERN RITA
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O. Pediatria II
POLAND
Warszawa
WARSAW
Polish registry of primary immunodeficiencies - contributes to the ESID European registry
Instytut "Pomnik-Centrum Zdrowia Dziecka"
Klinika Immunologii
SPAIN
Baleares
PALMA DE MALLORCA
REDIP: Spanish registry of primary immunodeficiencies - contributes to the ESID European registry
Hospital Universitari Son Espases
Servicio de Inmunología
SWEDEN
Region Stockholm
ADDRESS: NOT PROVIDED - SE
PIDcare: National registry of Primary immunodeficiencies
Institution: Information not provided - SE
Regional Registry Centre, South East Sweden
SWITZERLAND
Suisse Alémanique
BERN
Swiss Rare Disease Registry (SRSK)
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
Networks of registries and biobanks
MALTA
MALTA
MALTA
EuroBioBank: European Network of DNA, Cell and Tissue banks for rare diseases
Universita ta Malta
Molecular Genetics Laboratory
GERMANY
Baden-Württemberg
FREIBURG