AQW 28555/17-22

Ms Claire Sugden
Independent
East Londonderry

Tabled Date: 24/01/2022
Answered On Date: 25/03/2022
Priority Written: No

Question:
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.

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.