Rare diseases

Projects supported by the EU

Adequate definition, codification and inventorying of rare diseases

Cooperation between rare diseases organisations

  • strengthens collaboration at European level among patient organisations
  • develops partnerships among alliances
  • increases the visibility and operational capacity of rare-disease organisations and networks

Action for rare diseases

  • help existing European rare-disease networks share information more easily
  • promote better classification
  • develop strategies and mechanisms for exchanging information between rare-disease victims, volunteers and professionals
  • define relevant health indicators
  • develop comparable epidemiological data at EU level
  • support the exchange of best practise
  • develop measures for patient groups

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Year of funding Project Title Organisation
2014 Proposal for Operating Grant Framework Partnership Agreement 2015-2017 for the European Organisation for Rare Diseases (EURORDIS)

EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION

2014 Promoting Implementation of Recommendations on Policy, Information and Data for Rare Diseases

INSTITUT SCIENTIFIQUE DE SANTE PUBLIQUE

2013 ED_FY2014(ED_FY2014)
2013 INSERM_FY2014(INSERM_FY2014)
2013 European Conference on Rare Diseases & Orphan Products 2014 Berlin(ECRD 2014)
2012 EURORDIS_FY2013(EURORDIS_FY2013)
2012 European Surgical Registry for Rare Endocrine Tumours(EUROCRINE)
2012 UNEW_FY2013(UNEW_FY2013)
2012 An EU rare diseases registry for Niemann-Pick Disease type A, B and C.(NPDR)
2012 NEW e-HEALTH SERVICES FOR THE EUROPEAN REFERENCE NETWORK ON RARE ANAEMIAS(e-ENERCA)
2012 ESPNreg_FY2013(ESPNreg_FY2013)
2012 EMSP_FY2013(EMSP_FY2013)
2011 Information network on rare cancers (RARECARENet)

Fondazione IRCCS "Istituto Nazionale dei Tumori"

2011 Single Hub and Access point for paediatric Rheumatology in Europe (SHARE)

"Universitair Medisch Centrum Utrecht - UMCU

2011 European Conference on Rare Diseases and Orphan Products 2012 Brussels (ECRD 2012)

European Organisation for Rare Diseases

2011 EUCERD Joint Action: working for rare diseases (EJA)

University of Newcastle upon Tyne - UNEW

2011 European Haemophilia Network (EUHANET)

The University of Sheffield - USFD

2010 European Surveillance of Congenital Anomalies (EUROCAT)

University of Ulster

2010 European Register for Multiple Sclerosis - A tool to assess, compare and enhance the status of People with MS throughout the EU (EUReMS)

European Multiple Sclerosis Platform

2010 Building Consensus and Synergies for the EU Registration of Rare Disease Patients (EPIRARE)

Istituto Superiore di Sanità

2010 AP-HP_Porphyria_FY2011 (AP-HP_FY2011)

Assistance Publique - Hôpitaux de Paris

2010 An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome and Bardet Biedl Syndrome (EURO-WABB)

University of Birmingham C/O Diabetes Unit

2010 European Organisation for Rare Diseases (EURORDIS_FY2011)

European Organisation for Rare Diseases

2010 European registry and network for Intoxication type Metabolic Diseases (E-IMD)

Universitätsklinikum Heidelberg

2010 Development of the European portal of rare diseases and orphan drugs (JA-Orphanet Europe)

Institut national de la santé et de la recherche médicale, France

2009 2nd Pan-European Conference on Haemoglobinopathies(2PECH)

Thalassaemia International Federation

2009 SOCIAL ECONOMIC BURDEN AND HEALTH-RELATED QUALITY OF LIFE IN PATIENTS WITH RARE DISEASES IN EUROPE(BURQOL-RD)

FUNDACIÓN CANARIA DE INVESTIGACIÓN Y SALUD (Canary Islands Foundation for Research and Health)

2009 Dissemination and Implementation of the Standards of Care for Duchenne Muscular Dystrophy in Europe (including Eastern countries)(CARE-NMD)

Universitaetsklinikum Freiburg

2008 European network for central hypoventilation syndromes : Optimizing health care to patients(EU-CHS)

ASSISTANCE PUBLIQUE - HOPITAUX DE PARIS

2008 4th Eastern European Conference for Rare Diseases and Orphan Drugs ""TOGETHER FOR INTEGRATIVE APPROACH TO RARE DISEASES""(4th EEC RDOD)

Bulgarian Association for Promotion of Education and Science

2008 Scientific support to the Rare Disease Task Force activities(RDTF scientific support)

Institut National de la Santé et de la Recherche Médicale (SC11)

2008 OPERATING GRANT FOR RARE DISEASE ASSOCIATIONS(OPERA)

European Organisation for Rare Diseases

2008 National policies and plans for rare diseases in Europe : shared experiences and recommandations(national rare diseases plans)

Ministère de la santé, de la jeunesse, des sports et de la vie associative

2007 European Haemophilia Safety Surveillance System(EUHASS)

The University of Sheffield - USFD

2007 Patients' Consensus on Preferred Policy Scenarios for Rare Diseases(POLKA)

European Organisation for Rare Diseases - Plateforme Maladies Rares

2007 European Network of Reference for Rare Pediatric Neurological Diseases(nEUroped)

Hospices Civils de Lyon

2007 A reference network for Langerhans cell histiocytosis and associated syndrome in EU(EURO-HISTIO-NET 2008)

Assistance Publique Hôpitaux de Paris - AP-HP

2007 Improving Health Care and Social Support for Patients and Family affected by Severe Genodermatoses - TogetherAgainstGenodermatoses(TAG)

Fondation René Touraine

2007 European Project for Rare Diseases National Plans Development(EUROPLAN)

ISTITUTO SUPERIORE DI SANITA’ - ISS

2007 The PRES Network for Autoinflammatoy Diseases in childhood.(EuroFever)

Istituto Giannina Gaslini IRCCS - IGG

2006 A European Network of Centres of Reference for Dysmorphology(DYSCERNE)

The University of Manchester

2006 EUROCAT: Surveillance of Congenital Anomalies in Europe(EUROCAT)

University of Ulster

2006 European Register on Cushing’s Syndrome(ERCUSYN)

Institut de Recerca Endocrinologia de l' Hospital de la Santa Creu i Sant Pau

2006 European Centres of Reference Network for Cystic Fibrosis(ECORN-CF)

Klinikum der Johann Wolfgang Goethe-Universität

2006 European Porphyria Network: providing better healthcare for patients and their families(EPNET)

Assistance Publique - Hôpitaux de Paris

2006 Patient Associations and Alpha1 International Registry(PAAIR)

Stichting Alpha1 International Registry

2006 Surveillance of rare cancers in Europe(RARECARE)

Istituto Nazionale per lo Studio e la Cura dei Tumori

2006 Rare Diseases Portal(RD Portal)

Institut National de la Santé et de la Recherche Médicale

2006 Establishment of an European Network of Rare Bleeding Disorders(EN-RBD)

Università degli Studi di Milano

2005 European Myasthenia Gravis Network(-)

Université de Paris – Sud XI (UPS)

2005 Public Health Genetics(PHGEN)

Landesinstitut für den Öffentlichen Gesundheitsdienst (LÖGD)

2005 European Autism Information System(EAIS)

The Hope Project

2005 RARE DISEASE PATIENT SOLIDARITY(Rapsody)

European Organisation for Rare Diseases

2004 Scientific secretariat of the Rare Disease Task Force(RDTF)

INSERM - Institut National de la Santé et de la Recherche Médicale

2004 Policy Action and Information for Rare Diseases in Europe(PARACELSUS)

EURORDIS - European Organisation for Rare Diseases - Plateforme Maladies Rares

2004 European Network For Rare And Congenital Anaemias(-)

Hospital Clínic i Provincial de Barcelona - Establecimiento Público Estatal

2003 ORPHANET 4 (Phase 4)(-)

INSERM (Institut National de la Santé et de la Recherche Médicale)