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Rare diseases

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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

Networks of 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 fundingProject TitleOrganisation
2010AP-HP_Porphyria_FY2011 (AP-HP_FY2011)Assistance Publique - Hôpitaux de Paris
2010European Surveillance of Congenital Anomalies (EUROCAT)University of Ulster
2010European registry and network for Intoxication type Metabolic Diseases (E-IMD)Universitätsklinikum Heidelberg
2010An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome and Bardet Biedl Syndrome (EURO-WABB)University of Birmingham C/O Diabetes Unit
2010Development of the European portal of rare diseases and orphan drugs (JA-Orphanet Europe)Institut national de la santé et de la recherche médicale, France
2010European Organisation for Rare Diseases (EURORDIS_FY2011)European Organisation for Rare Diseases
2010Building Consensus and Synergies for the EU Registration of Rare Disease Patients (EPIRARE)Istituto Superiore di Sanità
2010European 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
2009Dissemination and Implementation of the Standards of Care for Duchenne Muscular Dystrophy in Europe (including Eastern countries)(CARE-NMD)Universitaetsklinikum Freiburg
2009SOCIAL 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)
20092nd Pan-European Conference on Haemoglobinopathies(2PECH)Thalassaemia International Federation
2008Scientific support to the Rare Disease Task Force activities(RDTF scientific support)Institut National de la Santé et de la Recherche Médicale (SC11)
20084th 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
2008OPERATING GRANT FOR RARE DISEASE ASSOCIATIONS(OPERA)European Organisation for Rare Diseases
2008National 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
2008European network for central hypoventilation syndromes : Optimizing health care to patients(EU-CHS)ASSISTANCE PUBLIQUE - HOPITAUX DE PARIS
2007Improving Health Care and Social Support for Patients and Family affected by Severe Genodermatoses - TogetherAgainstGenodermatoses(TAG)Fondation René Touraine
2007European Project for Rare Diseases National Plans Development(EUROPLAN)ISTITUTO SUPERIORE DI SANITA’ - ISS
2007A reference network for Langerhans cell histiocytosis and associated syndrome in EU(EURO-HISTIO-NET 2008)Assistance Publique Hôpitaux de Paris - AP-HP
2007The PRES Network for Autoinflammatoy Diseases in childhood.(EuroFever)Istituto Giannina Gaslini IRCCS - IGG
2007European Network of Reference for Rare Pediatric Neurological Diseases(nEUroped)Hospices Civils de Lyon
2007European Haemophilia Safety Surveillance System(EUHASS)The University of Sheffield - USFD
2007Patients' Consensus on Preferred Policy Scenarios for Rare Diseases(POLKA)European Organisation for Rare Diseases - Plateforme Maladies Rares
2006European Register on Cushing’s Syndrome(ERCUSYN)Institut de Recerca Endocrinologia de l' Hospital de la Santa Creu i Sant Pau
2006Surveillance of rare cancers in Europe(RARECARE)Istituto Nazionale per lo Studio e la Cura dei Tumori
2006EUROCAT: Surveillance of Congenital Anomalies in Europe(EUROCAT)University of Ulster
2006European Porphyria Network: providing better healthcare for patients and their families(EPNET)Assistance Publique - Hôpitaux de Paris
2006Rare Diseases Portal(RD Portal)Institut National de la Santé et de la Recherche Médicale
2006Patient Associations and Alpha1 International Registry(PAAIR)Stichting Alpha1 International Registry
2006European Centres of Reference Network for Cystic Fibrosis(ECORN-CF)Klinikum der Johann Wolfgang Goethe-Universität
2006A European Network of Centres of Reference for Dysmorphology(DYSCERNE)The University of Manchester
2006Establishment of an European Network of Rare Bleeding Disorders(EN-RBD)Università degli Studi di Milano
2005European Autism Information System(EAIS)The Hope Project
2005European Myasthenia Gravis Network(-)Université de Paris – Sud XI (UPS)
2005Public Health Genetics(PHGEN)Landesinstitut für den Öffentlichen Gesundheitsdienst (LÖGD)
2005RARE DISEASE PATIENT SOLIDARITY(Rapsody)European Organisation for Rare Diseases
2004Policy Action and Information for Rare Diseases in Europe(PARACELSUS)EURORDIS - European Organisation for Rare Diseases - Plateforme Maladies Rares
2004Scientific secretariat of the Rare Disease Task Force(RDTF)INSERM - Institut National de la Santé et de la Recherche Médicale
2004European Network For Rare And Congenital Anaemias(-)Hospital Clínic i Provincial de Barcelona - Establecimiento Público Estatal
2003ORPHANET 4 (Phase 4)(-)INSERM (Institut National de la Santé et de la Recherche Médicale)