AQW 28555/17-22 Written question to the Minister of Health
To ask the Minister of Health to detail (i) the number of people in Northern Ireland who suffer from a rare disease, defined by the EU as one that typically affects an average of one in 2,000 people; and (ii) the number of different rare diseases present in the population in Northern Ireland.
Asked by Claire Sugden MLA on 24 January 2022
- Answered
- Written
- After due date
- Tabled
- 24 January 2022
- Answer due by
- 8 February 2022
- Answered
- 25 March 202260 days after tabling
- Department
- Department of Health
- Priority question
- No
Answer
Although rare diseases may be individually rare, they are collectively common, with 1 in 17 people being affected by a rare disease at some point in their lives. It is estimated that currently, there are over 7,000 known rare diseases and new conditions are being described through medical literature on a regular basis.
My Department does not hold definitive information on the number of people with a rare disease or the number of rare diseases prevalent in the community. Such sensitive information may identify individuals.