Debate contribution: Haemochromatosis: Early Screening
Debate contribution by Mr Mike Nesbitt on .
- MLA
- Mr Mike Nesbitt
- Party at the time
- Ulster Unionist Party
- Date
- 18 February 2025
- Type
- Debate contribution
- Business
- Oral Answers to Questions
- Heading
- Haemochromatosis: Early Screening
- Assembly identifier
- Official Report component 4806423
Read the official Assembly record
Text
I thank the Member for her question, and I found it most interesting to attend that event yesterday in the Long Gallery. I will attempt to answer her question by referring to the rare diseases action plan, because the disease that she is talking about is just one of many rare diseases. The point that I was trying to make in my remarks yesterday was that, although we may refer to rare diseases as those diseases that rarely affect people, in fact, in the totality of rare diseases, we are talking about 110,000 people in Northern Ireland. Well over 100,000 people are, in one way or another, affected by a rare disease. So, let us not consider rare diseases as something that affect only a handful of people. On that basis, my Department recently published the year 2 progress report for the Northern Ireland rare diseases action plan. That was back in September, and it details good progress, including additional genome sequencing of people living with a rare condition who do not yet have a diagnosis, progression of rare disease care pathways for several paediatric and adult services and success in a number of important bid applications to external research organisations to progress the rare disease information hub and clinical trials. I say to the Member that I will go from the House and ensure that we are looking at a pathway to deal with that condition.
237 words. Text as published by the Northern Ireland Assembly.
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