Activities per year
Abstract
A rare disease is defined as occurring in <1 in 2,000 people, but cumulatively rare diseases are common with one in 17 people in the UK being affected by a rare condition. The problems encountered because of the low number of instances of rare diseases are vast and need solutions. Thus improving communication mechanisms both within and around the healthcare system is of vital importance to individuals living and working with rare diseases.Surveys amongst people affected by and working with a rare disease have been, and will continue to be, carried out to establish what communication for them is like within the healthcare system. The DELPHI model will then be used to identify the priorities for improving communication for people with rare disease in Northern Ireland. From the survey data there were 60 priorities identified which have been grouped under 4 headings: Sources of Information, Medical Care, Rare Disease Community, and Public Awareness.There is a huge amount of progress which needs to be made in order to improve how someone with a rare disease receives information, treatment, and ultimately holistic care to help them deal with the life-changing event of discovering that they have a rare disease
Original language | English |
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Number of pages | 1 |
Publication status | Accepted - Mar 2018 |
Event | Joint North South Rare Disease Conference 2018 - Riddel Hall, Belfast, United Kingdom Duration: 05 Mar 2018 → 05 Mar 2018 Conference number: 4 http://www.nirdp.org.uk/joint-north-south-rare-disease-conference-5-march-2018/ |
Conference
Conference | Joint North South Rare Disease Conference 2018 |
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Country/Territory | United Kingdom |
City | Belfast |
Period | 05/03/2018 → 05/03/2018 |
Internet address |
Keywords
- rare disease
- Registries
- Communication
Fingerprint
Dive into the research topics of 'Signposts to Change by and for the rare disease community'. Together they form a unique fingerprint.Activities
- 2 Participation in conference
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Joint North South Rare Disease Conference 2018
McAneney, H. (Participant)
05 Mar 2018Activity: Participating in or organising an event types › Participation in conference
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Joint North South Rare Diseases Conference 2018
Crowe, A. (Contributor)
05 Mar 2018Activity: Participating in or organising an event types › Participation in conference
Student theses
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Improving communication and identifying priorities for modernising rare disease services with healthcare practitioners, patients, families and advocacy groups
Crowe, A. L. (Author), McKnight, A. (Supervisor) & Duffy, G. (Supervisor), Dec 2023Student thesis: Doctoral Thesis › Doctor of Philosophy
File
Research output
- 1 Article
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Communication needs for individuals with rare diseases within and around the healthcare system of Northern Ireland
Crowe, A., McKnight, A. & McAneney, H., 21 Aug 2019, In: Frontiers in Public Health.Research output: Contribution to journal › Article › peer-review
Open AccessFile28 Citations (Scopus)201 Downloads (Pure)