Health Minister visits Queen¡¯s University to celebrate Rare Disease Day 2026
Health Minister Mike Nesbitt visited the Centre for Public Health at Queen¡¯s University to see first-hand the life-saving rare disease work carried out by Queen¡¯s researchers alongside their partners across Northern Ireland.
The Minister made the visit to the Centre ahead of Rare Disease Day 2026 which is celebrated every year on the 28 February.
Rare Disease Day raises awareness for patients, families and carers around the world that are affected by rare diseases such as Huntington's Disease, Fragile X Syndrome, Spinal Muscular Atrophy, and neuroendocrine cancers.
Rare diseases disproportionately affect children, with over 400,000 children across the UK affected. For example, all childhood cancers are considered rare, 60% of children with kidney failure are also living with a rare condition and every year more than 6,000 babies in the UK are born with a genetic condition so rare it does not yet have a name.
Rare disease also affects one in every 17 people, and there are over 114,000 people across Northern Ireland living with one.
As part of the visit, the Minister met with Queen’s academics, the Chair of Northern Ireland Rare Disease Partnership (NIRDP), and heard stories from patients with rare disease alongside their families and carers.
The Minister also presented two Rare Disease Sustained Community Contribution Awards from the NIRDP.
Speaking at the visit, Health Minister Mike Nesbitt said:
“I am very glad to be here today, to show my support for the rare disease community in Northern Ireland. I know that this is a very important week for the rare disease community, in the run up to International Rare Disease Day.
“I recognise the very valuable work that the Northern Ireland Rare Diseases Partnership does to improve the quality of life, treatment and care for those with rare diseases in Northern Ireland and the positive impact you have had, and I am delighted to present this award to Gillian and Sandra in recognition of the very positive contribution that they have made, and continue to make, in promoting the issue of rare diseases across Northern Ireland.”
There are more than 100 researchers working on individual rare diseases or rare disease therapeutics across Queen’s University, focussing on all aspects of improving diagnosis, treatment access, and patient and carer support.
The team also co-leads a £12M UK-wide LifeArc research centre which is helping to speed up the delivery of clinical trials, increase the number of opportunities for patients with rare diseases and enable more rapid approval of new therapies for use in the NHS.
The Queen’s team is driven by a strong track record of partnership with charities such as the Northern Ireland Rare Disease Partnership (NIRDP), alongside colleagues within the Belfast Health and Social Care Trust (BHSCT) Regional Molecular Diagnostic Service, NHS Trusts, Health and Social Care Research and Development Division, Public Health Agency, and policy colleagues.
Professor Amy Jayne McKnight, who leads the Rare Disease Research team at Queen’s University Belfast said:
“We are grateful for the opportunity today to highlight the life-changing work our rare disease team is delivering with local and international partners at Queen’s University.
“Everything we do is built on genuine collaboration - government, researchers, clinicians, allied health professionals, industry, and people with lived experience working side by side to help drive improved health outcomes and save lives for people living with a rare disease.
“The breakthroughs being made in the rare disease field are incredibly exciting and we at Queen’s are proud to put Northern Ireland at the forefront of these innovations.”
Media
Media inquiries to Sian Devlin at s.devlin@qub.ac.uk