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.

Official sources