Signposts to Change by and for the rare disease community

Ashleen Crowe, Amy McKnight, Helen McAneney

Research output: Contribution to conferencePosterpeer-review

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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 languageEnglish
Number of pages1
Publication statusAccepted - Mar 2018
EventJoint North South Rare Disease Conference 2018 - Riddel Hall, Belfast, United Kingdom
Duration: 05 Mar 201805 Mar 2018
Conference number: 4


ConferenceJoint North South Rare Disease Conference 2018
Country/TerritoryUnited Kingdom
Internet address


  • rare disease
  • Registries
  • Communication


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