Hdl Handle:
http://hdl.handle.net/10147/325633
Title:
National rare disease plan for Ireland 2014 - 2018
Authors:
Department of Health (DOH)
Citation:
Department of Health, Patient Safety First. National rare disease plan for Ireland 2014 - 2018. Dublin: Department of Health; 2014. 92 p
Publisher:
Department of Health
Issue Date:
Aug-2014
URI:
http://hdl.handle.net/10147/325633
Item Type:
Report
Language:
en
Description:
Chapter 1: Rare disease in Ireland – Why we need a plan This chapter defines rare diseases and estimates the level of these in the Irish population. It sets out the background in Ireland and in the European Union context, and includes the vision and underlying principles of this first National Rare Disease Plan for Ireland, covering the years 2014-2018. Chapter 2: How the National Rare Disease Plan was developed This chapter describes the national Steering Group that formulated the Rare Disease Plan and how it was developed with key stakeholders. In particular, it references the EUROPLAN Conference 2011 that led to the establishment of the Steering Group, the national consultation conference and the online public consultation, all of which played a key role in the development of the plan. A report on the public consultation process will be published alongside the National Rare Disease Plan for Ireland. Chapter 3: Recognition of rare disease – Information and research This chapter deals with the recognition of rare diseases and the availability of information and research on them. It begins with defining ‘a rare disease’ and then proceeds to cover pertinent areas on these topics, such as epidemiology, registers and computer information systems, exploring the strengths and weaknesses of each. It goes on to examine the research dimension of rare diseases, covering such areas as funding of research in Ireland, networks of researchers, participation in international initiatives and infrastructure. The final section explores the opportunities and challenges in the area
Keywords:
COMMUNICABLE DISEASE; PUBLIC HEALTH; EPIDEMIOLOGY; HEALTH POLICY

Full metadata record

DC FieldValue Language
dc.contributor.authorDepartment of Health (DOH)en_GB
dc.date.accessioned2014-09-02T13:32:31Z-
dc.date.available2014-09-02T13:32:31Z-
dc.date.issued2014-08-
dc.identifier.citationDepartment of Health, Patient Safety First. National rare disease plan for Ireland 2014 - 2018. Dublin: Department of Health; 2014. 92 pen_GB
dc.identifier.urihttp://hdl.handle.net/10147/325633-
dc.descriptionChapter 1: Rare disease in Ireland – Why we need a plan This chapter defines rare diseases and estimates the level of these in the Irish population. It sets out the background in Ireland and in the European Union context, and includes the vision and underlying principles of this first National Rare Disease Plan for Ireland, covering the years 2014-2018. Chapter 2: How the National Rare Disease Plan was developed This chapter describes the national Steering Group that formulated the Rare Disease Plan and how it was developed with key stakeholders. In particular, it references the EUROPLAN Conference 2011 that led to the establishment of the Steering Group, the national consultation conference and the online public consultation, all of which played a key role in the development of the plan. A report on the public consultation process will be published alongside the National Rare Disease Plan for Ireland. Chapter 3: Recognition of rare disease – Information and research This chapter deals with the recognition of rare diseases and the availability of information and research on them. It begins with defining ‘a rare disease’ and then proceeds to cover pertinent areas on these topics, such as epidemiology, registers and computer information systems, exploring the strengths and weaknesses of each. It goes on to examine the research dimension of rare diseases, covering such areas as funding of research in Ireland, networks of researchers, participation in international initiatives and infrastructure. The final section explores the opportunities and challenges in the areaen_GB
dc.language.isoenen
dc.publisherDepartment of Healthen_GB
dc.subjectCOMMUNICABLE DISEASEen_GB
dc.subjectPUBLIC HEALTHen_GB
dc.subjectEPIDEMIOLOGYen_GB
dc.subjectHEALTH POLICYen_GB
dc.titleNational rare disease plan for Ireland 2014 - 2018en_GB
dc.typeReporten
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