An Easyguide to Rare Diseases in Ireland: For Government, the General Public, Media and Political Parties

DC FieldValueLanguage
dc.contributor.authorRare Disease Taskforce-
dc.contributor.authorSomanadhan, Suja-
dc.contributor.authorMcKnight, Amy J.-
dc.contributor.authorMcAneney, Helen-
dc.contributor.authoret al.-
dc.date.accessioned2021-10-26T12:12:45Z-
dc.date.available2021-10-26T12:12:45Z-
dc.date.issued2020-02-20-
dc.identifier.urihttp://hdl.handle.net/10197/12578-
dc.description.abstractRare diseases are characterised by their relatively low prevalence (less than 1 in 2,000 people in the EU). To have a rare disease is to have a condition that often goes undiagnosed for years. Doctors may never have seen the condition before and hospital diagnostic services may struggle to find the rare disease presented by an individual and their family/carer.en_US
dc.language.isoenen_US
dc.publisherRare Disease Task Force, RCI, IPPOSI and RDIen_US
dc.subjectRare diseasesen_US
dc.subjectRare disease policyen_US
dc.subjectPatient advocacyen_US
dc.subjectIrelanden_US
dc.titleAn Easyguide to Rare Diseases in Ireland: For Government, the General Public, Media and Political Partiesen_US
dc.typeTechnical Reporten_US
dc.internal.authorcontactothersuja.somanadhan@ucd.ieen_US
dc.internal.webversionshttps://hrci.ie/3698-2/-
dc.statusPeer revieweden_US
dc.neeo.contributorRare Disease Taskforce||aut|-
dc.neeo.contributorSomanadhan|Suja|aut|-
dc.neeo.contributorMcKnight|Amy J.|aut|-
dc.neeo.contributorMcAneney|Helen|aut|-
dc.neeo.contributoret al.||aut|-
dc.description.othersponsorshipCystic Fibrosis Irelanden_US
dc.date.updated2020-09-09T22:08:43Z-
dc.rights.licensehttps://creativecommons.org/licenses/by-nc-nd/3.0/ie/en_US
item.fulltextWith Fulltext-
item.grantfulltextopen-
Appears in Collections:Nursing, Midwifery & Health Systems Research Collection
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