Stephen Donnelly (Wicklow, Fianna Fail)
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A National Rare Disease Plan for Ireland (2014 – 2018) was launched by the Minister for Health in July 2014. This is a generic policy framework for rare diseases. The scope of the plan is broad given that there are approximately 8,000 rare diseases affecting millions of EU citizens; and consequently, there can be a dearth of expertise and knowledge about some rare diseases, simply because they are so rare.

Many of the major recommendations of the plan have already been implemented including the establishment of a National Clinical Programme for Rare Diseases and a Rare Disease Office. Building on this progress to date, themes for inclusion in a roadmap for the coming period have been agreed with the Rare Disease Task Force, which comprises the main rare disease advocacy groups; Rare Disease Ireland, the Medical Research Charities Group (MRCP), and the Irish Platform for Patient Organisations, Science and Industry (IPPPOSI). The Rare Disease Plan is now firmly embedded in the work of the Rare Disease Office which is under the governance of the HSE, Office of the Chief Clinical Officer. This means that, from 01 September 2020, the NRDO became the main contact point and driver for national HSE rare disease projects and initiatives and the National Clinical Programme for Rare Diseases was wound down and any outstanding projects transferred to the NRDO.

I recently met with the HSE, The National Rare Disease Office and The Rare Disease Taskforce which comprises the main rare disease advocacy groups; Rare Disease Ireland (RDI), the Medical Research Charities Group (MRCP), and the Irish Platform for Patient Organisations, Science and Industry (IPPPOSI). A very fruitful discussion was held regarding priority areas for the future in order to build on the significant progress made to date in implementing the Rare Disease Plan. A number, of themes for inclusion in a roadmap for the coming period have been agreed.