The Irish Medical Times reported that the Department is in consultation with the HSE on the matter, which would also need to be agreed by the relevant authorities in Northern Ireland.
The National Clinical Programme for Rare Diseases has been established, led by Prof Eileen Treacy. This will ultimately be a channel for advancing and implementing recommendations in the HSE Rare Diseases Plan. To support the Clinical Programme, a Rare Disease Office is being established by the HSE and it is expected that this office will be in place later this year.
A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000. There are an estimated 6-8,000 known rare diseases affecting up to 6% of the total EU population, (at least 30 million Europeans), and perhaps up to 300,000 Irish people during their lives.
Officials from the Department have met with their counterparts in Northern Ireland to identify potential opportunities for improving the delivery of healthcare through clinical linkages and partnerships on an all-island basis.
The subject of rare diseases has also been discussed as a bilateral issue at the North South Ministerial Council. There was broad agreement in principle to identify specialist areas for future rare disease collaboration and develop these further, Minister of State Kathleen Lynch said in response to Dáil questioning by Fianna Fáil Health Spokesperson Deputy Billy Kelleher.
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