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Funded by an IRDiRC member =

Registries and Biobanks

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

Cloud-R HAE Register Hereditary Angiodema
Hôpitaux Paris Centre - site Cochin
Centre national de référence des angioedčmes (CREAK)

GERMANY

Berlin
BERLIN

Core documentation of children and adolescens with rheumatic diseases
Deutsches Rheuma-Forschungszentrum Berlin
Forschungsbereich Epidemiologie

HUNGARY

Közép-Magyarország
BUDAPEST

Országos Angioödéma Regiszter
Semmelweis Egyetem, Kútvölgyi Klinikai tömb
Semmelweis Egyetem III. Sz. Belgyógyászati Klinika Kutatólaboratóriuma

ITALY

LOMBARDIA
MILANO

HAE-registry: European hereditary angioedema patient registry
Azienda Ospedaliera "Luigi Sacco"
Centro Studi Angioedema

ITALY

LOMBARDIA
MILANO

The Italian Registry of Hereditary Angioedema
Azienda Ospedaliera "Luigi Sacco"
Centro Studi Angioedema

SWEDEN

Skane
LUND

SERPING1base: Mutation registry for Hereditary angioedema
Lund University
Department of Experimental Medical Science

UNITED KINGDOM

Greater London
LONDON

English hereditary angioedema patient registry - part of the HAE European registry
Barts and the London NHS Trust
Department of Immunology

UNITED STATES

Massachusetts
CAMBRIDGE

IOS : Icatibant Outcome Survey for hereditory angioedema
Shire Human Genetics Therapies, Inc.

FRANCE

ILE-DE-FRANCE
PARIS

Cobra: COhort Angioedema Berinert
Hôpitaux Paris Centre - site Cochin
Centre national de référence des angioedčmes (CREAK)

HUNGARY

Közép-Magyarország
BUDAPEST

HAEdb: C1 inhibitor gene mutation database
Institute of Haematology and Immunology

ITALY

LOMBARDIA
MILANO

The Global Registry of Hereditary Angioedema Type I and II
Azienda Ospedaliera "Luigi Sacco"
Centro Studi Angioedema

Networks of registries and biobanks

SPAIN

Madrid
MADRID

SpainRDR: Spanish Rare Disease Registries Research Network (patient registries)
  • ISCIII - Instituto de Salud Carlos III
  • Instituto de Investigación de Enfermedades Raras