News & Events

The Rare Disease Implementation Plan for Northern Ireland has been launched

Last Reviewed 02/11/2015

By Emily Muir

We are delighted to announce that last week Simon Hamilton, the Northern Ireland Executive Health Minister, launched 'Providing High Quality Care for people affected by Rare Diseases – The Northern Ireland Implementation Plan for Rare Diseases'. The Plan reaffirms Northern Ireland’s commitment to effectively implement the UK Strategy for Rare Diseases and ensure that people living with a rare disease have access to the best evidence-based care and treatment that health and care services, together with charities, research and industry can provide.

The Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2015-2021 in relation to the 51 Commitments in the UK Strategy for Rare Diseases. Northern Ireland follows Wales and Scotland in detailing how they plan to address these commitments.

The actions committed to by the Department of Health, Social Services and Public Safety in Northern Ireland (DHSSPS) include (but are not limited to):

  • A continued commitment to work with their patient partners, including our partners in Northern Ireland the Northern Ireland Rare Disease Partnership (NIRDP) and other patient groups.
  • An agreement to consider adopting the Generic Rare Disease Annex for all service specifications, currently being developed by NHS England, which will outline requirements and considerations that need to be made for rare disease patients (including in diagnostic pathways and specialist centres).
  • Identifying genetic services as a priority for progress and working to develop a service specification for medical and clinical genetics – which should enable all individuals with genetic conditions to access the tests they need to get a diagnosis.
  • Steps to facilitate the creation of a Northern Ireland register of rare diseases – this could help provide important information about the frequency and nature of rare diseases.
  • The announcement of a £3.3million investment in the establishment of a Genomics Medicine Centre in Northern Ireland, working with Genomics England, and participating in the 100,000 Genomes Project.
  • Work to identify areas which would benefit from cross border collaboration with the Republic of Ireland to maximise patient benefit.

To read all of the actions proposed by the DHSSPS please look at the plan

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