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

Files in This Item:
 File SizeFormat
DownloadRare-Disease-Guide-02-20.pdf15.77 MBAdobe PDF
Title: An Easyguide to Rare Diseases in Ireland: For Government, the General Public, Media and Political Parties
Authors: Rare Disease TaskforceSomanadhan, SujaMcKnight, Amy J.McAneney, Helenet al.
Permanent link: http://hdl.handle.net/10197/12578
Date: 20-Feb-2020
Online since: 2021-10-26T12:12:45Z
Abstract: Rare 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.
Funding Details: Cystic Fibrosis Ireland
Type of material: Technical Report
Publisher: Rare Disease Task Force, RCI, IPPOSI and RDI
Keywords: Rare diseasesRare disease policyPatient advocacyIreland
Other versions: https://hrci.ie/3698-2/
Language: en
Status of Item: Peer reviewed
This item is made available under a Creative Commons License: https://creativecommons.org/licenses/by-nc-nd/3.0/ie/
Appears in Collections:Nursing, Midwifery & Health Systems Research Collection

Show full item record

Page view(s)

230
Last Week
2
Last month
checked on Nov 30, 2021

Download(s)

16
checked on Nov 30, 2021

Google ScholarTM

Check


If you are a publisher or author and have copyright concerns for any item, please email research.repository@ucd.ie and the item will be withdrawn immediately. The author or person responsible for depositing the article will be contacted within one business day.