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Funded by an IRDiRC member = Member of a ERN =

Registries and Biobanks

GERMANY

Bayern
MÜNCHEN

Kids Lung Register: International patient register for rare lung diseases
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister

GERMANY

Bayern
MÜNCHEN

GERMANY

Bayern
MÜNCHEN

Funded by an IRDiRC memberKids Lung Register: International biobank for rare lung diseases
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister

GERMANY

Bayern
MÜNCHEN

chILD-EU-registry: European Biobank for Rare Lung Diseases in Children - contributes to eurILDreg (European ILD Registry and Biobank)
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Kinderlungenregister

AUSTRIA

TIROL
INNSBRUCK

Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Institut für Humangenetik

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

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)

GERMANY

Hessen
FRANKFURT AM MAIN

Funded by an IRDiRC memberERN [ERN-LUNG] : REGISTRY WAREHOUSE - RD Registry Data Warehouse
Universitätsklinikum Frankfurt
ERN-LUNG Coordinating Center

ITALY

EMILIA ROMAGNA
BOLOGNA

Funded by an IRDiRC memberTNGB: Telethon Network of Genetic Biobanks
Istituto Ortopedico Rizzoli - Ospedale
Struttura Complessa Malattie Rare Scheletriche

ITALY

LAZIO
ROMA

RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanitŕ
Centro Nazionale Malattie Rare

ITALY

LIGURIA
GENOVA

Biobank of cell lines and DNA from patients affected by genetic diseases
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

TOSCANA
SIENA

Siena Genetic Biobank
Azienda Ospedaliero Universitaria Senese - Policlinico Santa Maria alle Scotte
U.O.C. di Genetica Medica

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

Funded by an IRDiRC memberKorean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory

MOROCCO

Rabat
RABAT

Moroccan National Genetic Database
Institut National d'Hygične
Département de génétique médicale

NORWAY

Řstlandet
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

Funded by an IRDiRC memberRare 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
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 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 Extremeńo 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

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

Funded by an IRDiRC memberRePER: 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

SPAIN

País Vasco
BARAKALDO

Funded by an IRDiRC memberBasque 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

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

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

UNITED STATES

South Dakota
SIOUX FALLS

BELGIUM

ANTWERPEN
ANTWERPEN

Collection of FRA12A carrier DNA samples
University of Antwerp - UA, Campus Drie Eiken
Medical Genetics Unit

FRANCE

GRAND-EST
ILLKIRCH-GRAFFENSTADEN

Funded by an IRDiRC memberRaDiCo-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

NETHERLANDS

Limburg
MAASTRICHT

NETHERLANDS

Limburg
MAASTRICHT

Biobank Intellectual Disability and Multiple Congenital Anomalies (DNA)
Maastricht UMC+
Biobank Klinische Genetica Maastricht

NETHERLANDS

Zuid-Holland
ROTTERDAM

Funded by an IRDiRC memberERN [ERNICA] - ERNICA-registry for improving care
Erasmus MC - Erasmus Medisch Centrum
Afdeling Kinderchirurgie

SPAIN

Madrid
MADRID

Funded by an IRDiRC memberERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

UK10K RARE FIND - Familial Intellectual Disability variant database
Addenbrooke's Hospital
Familial Gastric Cancer - Addenbrookes

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

UK10K RARE FIND - Familial Intellectual Disability variant database
Wellcome Trust/MRC Building
Cambridge Institute for Medical Research

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian registry of primary immunodeficiencies - contribution to the ESID registry
Hôpital Universitaire de Bruxelles (H.U.B) - Site Hôpital Erasme
Unité de Traitment des Immunodéficiences

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

OOST-VLAANDEREN
GENT

Belgian registry of primary immunodeficiencies - contribution to the ESID registry
Universitair ziekenhuis Gent (UZ Gent)
Centrum voor primaire immuunstoornissen - UZ Gent (CPIG)

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

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

Funded by an IRDiRC memberPID-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

IRELAND

County Dublin
DUBLIN

ITALY

LIGURIA
GENOVA

Funded by an IRDiRC memberERN [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

SWEDEN

Region Stockholm
ADDRESS: NOT PROVIDED - SE

PIDcare: National registry of Primary immunodeficiencies
Institution: Information not provided - SE
Regional Registry Centre, South East Sweden