Health Minister, Simon Hamilton MLA, has announced £190,000 new investment to ensure that patients from Northern Ireland have full access to new genetic tests for rare diseases.
The Minister said: “Such is the pace of development of new tests in genetics that last year alone the UK Genetic Testing Network (UKGTN) introduced 11 new tests for conditions such as heptology, metabolic disorders, neurology and ophthalmology. I am determined that Northern Ireland patients will have full access to these tests, where clinical benefits have been identified, and have therefore committed new investment of £190,000 in our genetics testing programme to provide routine access to UKGTN tests.”
The Minister also welcomed a report produced by the UK Rare Disease Forum which highlights progress across the England, Scotland, Wales and Northern Ireland in regard to meeting the recommendations of the UK Strategy for Rare Diseases since its publication two years ago.
The Minister continued: “I am particularly pleased to announce this investment on International Rare Disease Day which coincides with publication of the first Progress Report on the UK Strategy for Rare Diseases from the UK Rare Disease Forum. The Report highlights progress made by my Department and other stakeholders in implementing the Northern Ireland Rare Disease Implementation Plan, including the significant investment of £3.3million to establish a Genomics Medicine Centre to enable our patients to participate in the UK 100,000 Genomes Project.
“My Department looks forward to building on the progress to date over the remaining four years of the UK Strategy and implementation of the early actions to which I committed £70,000 investment last year.”
Notes to editors:
1. The Forum works with the four countries of the UK to monitor the implementation of the UK Strategy for Rare Diseases. The Forum monitors how the vision and 51 commitments outlined in the UK Strategy for Rare Diseases are being responded to across the UK. The Forum reports progress on implementation of the strategy to the health ministers of the four UK countries every two years.
2. The strategy covers five main areas:
- empowering those affected by rare diseases
- identifying and preventing rare diseases
- diagnosis and early intervention
- coordination of care
- the role of research
3. The Northern Ireland Rare Diseases Implementation Plan has been produced by DHSSPS working with representatives from Health and Social Care, Queen’s University Belfast, University of Ulster and the Northern Ireland Rare Disease Partnership. The plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in respect of the 51 Commitments in the UK Rare Diseases Strategy that the Health Departments from the four UK countries endorsed in 2013. These Commitments are set out under five key themes in the UK Strategy. The Northern Ireland Plan has a sixth theme, setting out a commitment to work with the health authorities in the Republic of Ireland to realise the mutual benefits of cross-border collaboration on rare diseases.
4. Progress Report is available online
5. Media enquiries about this press release to DHSSPS Press Office on 028 9052 0575, or out of office hours contact to Duty Press Officer via pager number 07699 715440 and your call will be returned. Follow us on Twitter @healthdpt
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