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dc.contributor.authorNational Clinical Programme for Rare Diseases
dc.date.accessioned2018-07-26T09:00:02Z
dc.date.available2018-07-26T09:00:02Z
dc.date.issued2018-02-23
dc.identifier.urihttp://hdl.handle.net/10147/623124
dc.descriptionThe National Clinical Programme was established in December 2013. It is an initiative of the HSE, in partnership with the Royal College of Physicians. A key objective of the Clinical Programme for Rare Diseases is to improve access for rare diseases patients and families to quality information and support, to enable accurate and timely diagnosis and access to appropriate specialist care. Huge challenges remain with unmet need for many rare diseases. Currently <10% of all rare diseases have a specific treatment. Research in rare diseases is a priority at European level in line with development of European Reference Networks which will have a substantial clinical research focus. One of the objectives of the National Clinical Programme’s is to support the development of research in rare diseases at our national centres of expertise. The key objectives of the workshop were aimed to promote and share information about the new European Commission Horizon 2020 Joint Research Programme for Rare Diseases, to highlight European and international good examples of clinical research infrastructure and to consider the infrastructure requirements for enhancing clinical research at our Centres of expertise in the context of our Irish centres collaborating with and joining the European Reference Networks. On behalf of the National Clinical Programme for Rare Disease I would like to thank our workshop partners The Medical Research Charities Group and The Health Research Board who supported this workshop.en
dc.language.isoenen
dc.publisherHealth Service Executive (HSE)en
dc.subjectRARE DISEASEen
dc.subjectCLINICAL PROGRAMMESen
dc.titleNational Clinical Programme for Rare Diseases Workshop on Clinical Research in Rare Diseasesen
dc.typeReporten
dc.contributor.departmentNational Clinical Programme for Rare Diseasesen
refterms.dateFOA2018-08-30T16:09:37Z


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