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Funded by an IRDiRC member = 
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Registries and Biobanks
DENMARK
Hovedstaden
COPENHAGEN
Nordic Database for Rare Diseases
Rigshospitalet
Department of Clinical Genetics and Paediatrics
FRANCE
CENTRE-VAL DE LOIRE
TOURS
NF-France: genotype/phenotype database on neurofibromatosis 1
CHRU de Tours - Hôpital Clocheville
Pôle Enfants - Neuropédiatrie et handicaps
FRANCE
ILE-DE-FRANCE
CRÉTEIL
NF-France: genotype/phenotype database on neurofibromatosis 1
Hôpitaux Universitaires Henri Mondor
Service de dermatologie
HUNGARY
Dél-Dunántúl
PECS
Neurofibromatosis type 1 biobank
Clinical Center - University of Pécs
Department of Medical Genetics
ITALY
LIGURIA
GENOVA
Registry of Neurofibromatosis
IRCCS Ospedale Policlinico San Martino - IST - DINOGMI
Dipartimento di Neuroscienze, Oftalmologia, Riabilitazione, Genetica e Scienze Materno Infantili
ITALY
PUGLIA
SAN GIOVANNI ROTONDO
Genetic Biobank from patients with Williams-Beuren syndrome and other genomic disorders
IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II
U.O.C. Genetica Medica
ITALY
VENETO
PADOVA
North-east Italy registry of neurofibromatosis
Azienda Ospedaliera di Padova
U.O.C. Genetica ed Epidemiologia Clinica
NETHERLANDS
Zuid-Holland
ROTTERDAM
ENCORE Biobank for Neurodevelopmental Disorders (blood/saliva/skin biopsies)
Erasmus MC - Erasmus Medisch Centrum
Afdeling Neurowetenschappen
SPAIN
Asturias
OVIEDO
Registro MEN: Spanish registry of multiple endocrine neoplasia, pheochromocitomas and paragangliomas
Hospital Universitario Central de Asturias
Servicio de Endocrinología y Nutrición
SPAIN
Castilla - León
SALAMANCA
National DNA Bank: Rare diseases sample collection
Centro de Investigación del Cáncer (USAL-CSIC)
Banco Nacional de ADN
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
GERMANY
Baden-Württemberg
HEIDELBERG
National Cancer-predisposing syndrome registry
Deutsches Krebsforschungszentrum
KITZ - Hopp-Kindertumorzentrum Heidelberg
GERMANY
Baden-Württemberg
TÜBINGEN
STEP Registry: Registry for rare tumors in children and adolescents
Universitätsklinik für Kinder- und Jugendmedizin Tübingen
Abteilung für allgemeine Pädiatrie, Hämatologie/Onkologie
GERMANY
Niedersachsen
HANNOVER
National Cancer-predisposing syndrome registry
Medizinische Hochschule Hannover
Klinik für Pädiatrische Hämatologie und Onkologie
GERMANY
Nordrhein-Westfalen
DORTMUND
STEP Registry: Registry for rare tumors in children and adolescents
Klinikum Dortmund gGmbH - Klinikzentrum Mitte
Klinik für Kinder- und Jugendmedizin
NETHERLANDS
Zuid-Holland
LEIDEN
Biobank Bone Remodeling and Mineralisation Disorders (whole blood/plasma/serum/urine/DNA/bone)
LUMC - Leids Universitair Medisch Centrum
Afdeling Endocrinologie
PORTUGAL
CENTRO
COIMBRA
Central regional cancer patient registry
Instituto Português de Oncologia de Coimbra de 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, EPE / IPOFG - CRO Porto
Registo Oncológico Regional do Norte
PORTUGAL
NORTE
VILA NOVA DE GAIA
Vila Nova de Gaia regional cancer registry (ROG)
Centro Hospitalar de Vila Nova de Gaia
Registo de Cancro (ROG)
AUSTRIA
TIROL
INNSBRUCK
Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck
AUSTRIA
WIEN
WIEN
Austrian cancer registry - contributes to the RARECARE project
Österreichisches Krebsregister
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
ERN [Endo-ERN] - EuRRECa: European Registries for Rare Endocrine Conditions - Belgian contribution (HUDERF)
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Unité d'endocrinologie - HUDERF
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
ENRAH: European alternating hemiplegia and rare epilepsies registry in childhood
Secretariat Brussels, Postbus 10009
European Network for Research on Alternating Hemiplegia
BELGIUM
VLAAMS BRABANT
LEUVEN
ERN [EpiCARE] - EPICARE-GRANT: An Operational EPICARE Registry for all Rare and Complex Epilepsies
KU Leuven
DENMARK
Sjælland
COPENHAGEN
Mendelian cytogenetics network online database
The Panum Institute-University of Copenhagen
Department of Cellular and Molecular Medicine
ESTONIA
Tallinn
TALLINN
Estonian cancer registry - contributes to the RARECARENet project
National Institute for Health Development
Estonian Cancer Registry
ESTONIA
Tartu
TARTU
Biobank of the Estonian Genome Centre
Institute of Genomics of University of Tartu
The Estonian Genome Centre
FINLAND
Finland
HELSINKI
Finnish cancer registry - contributes to the RARECARE project
Syöpätautien tilastollinen ja epidemiologinen tutkimuslaitos
Finnish Cancer Registry
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 [PAEDCAN] - PARTNER: Paediatric Rare Tumours Networks - European Registry
CLCC Institut Curie
Institut Curie
FRANCE
ILE-DE-FRANCE
PARIS
RaDiCo-FARD: National cohort for the evaluation of individual burden in the course of rare skin diseases
Hôpital Necker-Enfants Malades
Centre MAGEC (MAladies rares Génétiques à Expression Cutanée)
FRANCE
ILE-DE-FRANCE
PARIS
ERN [Skin] - ERN-Skin REGISTRY: Interoperable ERN on Rare and Undiagnosed Skin Disorders
Hôpital Necker-Enfants Malades
Service de dermatologie
GERMANY
Baden-Württemberg
HEIDELBERG
Epidemiological cancer registry Baden-Württemberg
Epidemiologisches Krebsregister am DKFZ Heidelberg
Epidemiologisches Krebsregister Baden-Württemberg
GERMANY
Baden-Württemberg
HEIDELBERG
ERN [ERKNet] - ERKReg: The European Rare Kidney Disease Registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg
GERMANY
Baden-Württemberg
TÜBINGEN
RetDis Database: blood or DNA samples of patients and families with inherited eye diseases
Department für Augenheilkunde Tübingen
Molekulargenetisches Labor
GERMANY
Baden-Württemberg
TÜBINGEN
RetDis Database: clinical descriptions of patients and families with inherited eye diseases
Department für Augenheilkunde Tübingen
Molekulargenetisches Labor
GERMANY
Bayern
ERLANGEN
EEBB: European Epilepsy Brain Bank
Universitätsklinikum Erlangen - Kopfkliniken
Neuropathologisches Institut
GERMANY
Bayern
ERLANGEN
German epilepsy registry
Universitätsklinikum Erlangen - Kopfkliniken
Neuropathologisches Institut
GERMANY
Bayern
MÜNCHEN
MCR - Munich Cancer Registry
LMU Klinikum der Universität München - Campus Großhadern
Tumorregister München
GERMANY
Bayern
NÜRNBERG
Bayern population based cancer registry
Registerstelle des Krebsregisters Bayern
GERMANY
Berlin
BERLIN
Common cancer registry of Berlin, Brandenburg, Mecklenburg-Western Pomerania, Saxony-Anhalt and the free states Saxony and Thuringia
Gemeinsames Krebsregister (GKR)
Registerstelle des Gemeinsamen Krebsregisters (GKR)
GERMANY
Bremen
BREMEN
Bremen cancer registry
Bremer Institut für Präventionsforschung und Sozialmedizin (BIPS)
Registerstelle des Bremer Krebsregisters
GERMANY
Hamburg
HAMBURG
Hamburg cancer registry
Behörde für Wissenschaft, Forschung, Gleichstellung und Bezirke
Hamburgisches Krebsregister
GERMANY
Nordrhein-Westfalen
BONN
Brain-Net - brain tissue bank Bonn (epilepsy, brain tumor)
Universitätsklinikum Bonn (AöR)
Hirntumor-Referenzzentrum der DGNN
GERMANY
Rheinland-Pfalz
MAINZ
German childhood cancer registry (Partner of ACCIS: Automated Childhood Cancer Information System, Member of IACR and ENCR)
Institut für Medizinische Biometrie, Epidemiologie und Informatik (IMBEI)
Deutsches Kinderkrebsregister am IMBEI
GERMANY
Saarland
SAARBRÜCKEN
EKRS: Saarland Cancer Registry - contributes to the RARECARE Project
Epidemiologisches Krebsregister Saarland
GERMANY
Schleswig-Holstein
KIEL
German central children tumor registry
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Institut für Pathologie des UKSH und der CAU zu Kiel
GERMANY
Schleswig-Holstein
LÜBECK
Schleswig-Holstein cancer registry
Institut für Krebsepidemiologie e.V.
Registerstelle Krebsregister Schleswig-Holstein
ICELAND
ICELAND
REYKJAVIK
Icelander cancer registry - contributes to the RARECARE project
Icelandic Cancer Registry
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
LOMBARDIA
MILANO
ERN [EURACAN] - STARTER: STarting an Adult Rare Tumor European Registry
Fondazione IRCCS Istituto Nazionale dei Tumori
Fondazione IRCCS - Istituto Nazionale dei Tumori
KOREA, REPUBLIC OF
KOREA, REPUBLIC OF
SEOUL
Korean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory
MALTA
MALTA
GUARDAMANGIA
Maltese cancer registry - contributes to the RARECARE project
Departement of Health Information
Malta National Cancer Registry
MOROCCO
Rabat
RABAT
Moroccan National Genetic Database
Institut National d'Hygiène
Département de génétique médicale
NORWAY
Østlandet
OSLO
Norwegian cancer registry - contributes to the RARECARE project
Institute of Population-Based Cancer Research
Cancer Registry of Norway
NORWAY
Østlandet
OSLO
Norwegian registry on rare disorders
Oslo University Hospital, Ullevaal
Norsk register for sjeldne diagnoser
POLAND
Kielce
KIELCE
Kielce cancer registry - contributes to the RARECARE project
Holycross Cancer Centre
Department of Cancer Control & Epidemiology
POLAND
Kraków
KRAKOW
Cracow cancer registry - contributes to the RARECARE project
Centrum Onkologii - Instytut im. Marii Sklodowskiej-Curie, Oddzial w Krakowie
Department of Epidemiology
POLAND
Warszawa
WARSZAWA
Mazovian Cancer Registry - contributes to the RARECARE project
Centrum Onkologii - Instytut im. Marii Sklodowskiej-Curie
Cancer Center and Institute of Oncology
PORTUGAL
NORTE
PORTO
Tumour bank
Centro Hospitalar Universitário de S. João, EPE
Serviço de Anatomia Patológica
PORTUGAL
SUL
LISBOA
Registo Oncológico Regional Sul - contribui para o projeto RARECARE
Instituto Português de Oncologia - Centro de Lisboa
Registo Oncológico Regional Sul
SLOVAKIA
Bratislavsky kraj
BRATISLAVA
National cancer registry (contributes to the RARECARE project)
National Health Information Center
National Cancer Registry
SLOVENIA
SLOVENIA
LJUBLJANA
Slovenian cancer registry - contributes to the RARECARE project
Institute of Oncology Ljubljana
Cancer Registry of Slovenia
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
Cataluña
ESPLUGUES DE LLOBREGAT
Biobank of the Sant Joan de Déu Children's Hospital for Research (BHISJDI)
Fundació Sant Joan de Déu - Institut de Recerca Sant Joan de Déu
Biobanco del Hospital Infantil Sant Joan de Déu para la investigación
SPAIN
Comunidad Valenciana
VALENCIA
SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras
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 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
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
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
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
SWEDEN
Region Stockholm
STOCKHOLM
SBCR: Swedish Childhood Cancer Registry
Astrid Lindgren Children's Hospital - Karolinska
Paediatric Oncology
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
GERMANY
Baden-Württemberg
HEIDELBERG
CERTAIN: Cooperative European Paediatric Renal Transplant Initiative registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg
GERMANY
Niedersachsen
GÖTTINGEN
ESNEK - Rare paediatric neurological disease registry Germany
Universitätsmedizin Göttingen
Geschäftsstelle der ESNEK
GERMANY
Nordrhein-Westfalen
MÜNSTER
Brain-Net - brain tissue bank Munster (pediatric neuropathology)
Institut für Neuropathologie der Medizinischen Fakultät Münster
Institut für Neuropathologie
ITALY
EMILIA ROMAGNA
BOLOGNA
Italian registry of skeletal dysplasia
Istituto Ortopedico Rizzoli - Centro di Ricerca e Poliambulatorio
Laboratorio di Genetica Molecolare - S.S.D. di Genetica Medica e Malattie Rare Ortopediche
NETHERLANDS
Noord-Holland
AMSTERDAM
ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy
Amsterdam UMC, locatie AMC
Afdeling Klinische Informatiekunde
NETHERLANDS
Zuid-Holland
LEIDEN
ERN [BOND] - EuRR-Bone: European Registry for Rare Bone and Mineral Conditions
LUMC - Leids Universitair Medisch Centrum
Coordination center EuRR-Bone Registry
UNITED KINGDOM
West Midlands
BIRMINGHAM
UK Renal Rare Disease Registry (RaDaR) - Part of OXAL Europe
Birmingham Children's Hospital NHS Foundation Trust
Birmingham Children's Hospital
ITALY
LAZIO
ROMA
National Registry of Congenital Malformations
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare
SPAIN
Madrid
MADRID