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dc.contributor.authorNational Clinical Programme for Rare Diseases
dc.date.accessioned2019-11-13T10:07:58Z
dc.date.available2019-11-13T10:07:58Z
dc.date.issued2019-07
dc.identifier.urihttp://hdl.handle.net/10147/626904
dc.descriptionThis document was developed by the National Clinical Programme for Rare Diseases. It follows many recommendations of the 2014-2018 Department of Health first National Plan for Rare Diseases. It outlines the current vision for delivery of integrated care for Irish individuals affected with rare diseases both in the national and European contexts. It should be noted that due to very rapid and evolving advances in the diagnosis and care provided for individuals with rare diseases, including advances in reimbursement models for Orphan Medicinal Products, it is considered that this model of care will require continuous updating and review (at least on a five-yearly basis). A rare disease is defined in Europe as a disease having a prevalence of fewer than five cases for every ten thousand persons. There are currently up to 8,000 described rare diseases. Collectively, these diseases affect around 6% of the population (accounting for at least 300,000 individuals in Ireland). Because of inadequate coding systems for rare diseases, not only nationally but also internationally, the total dimension and extent of the disease burden for these conditions is not currently quantified. It is estimated that approximately 70% of rare diseases have a genetically identified origin (Orphanet 2019).en_US
dc.language.isoenen_US
dc.publisherHealth Service Executive (HSE)en_US
dc.relation.ispartofseriesNational Clinical Programmesen_US
dc.subjectCLINICAL GUIDELINESen_US
dc.subjectRARE DISEASEen_US
dc.titleModel of Care for Rare Diseasesen_US
dc.typeReporten_US
dc.contributor.departmentHealth Service Executive; Royal College of Physicians of Irelanden_US
refterms.dateFOA2019-11-13T10:07:59Z


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