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Health Strategies

Dáil Éireann Debate, Tuesday - 27 July 2021

Tuesday, 27 July 2021

Questions (1478)

David Cullinane

Question:

1478. Deputy David Cullinane asked the Minister for Health when the review of the National Rare Disease Plan 2014-2018 will be published; if a successor policy will be published; and if he will make a statement on the matter. [33531/21]

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Written answers

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 HSE National Clinical Programme for Rare Diseases and a Rare Disease Office. Building on this progress, themes for inclusion in a roadmap for the coming period were agreed, with the Rare Disease Task Force, 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).

In late 2020, the National Clinical Programme for Rare Diseases was operationalised and incorporated into the National Rare Disease Office. So, from 01 September 2020, the NRDO became the main contact point and driver for national HSE rare disease projects and initiatives. The work of the NRDO is overseen and governed by HSE Acute Operations under the governance of the Office of the Chief Clinical Officer, where the National Rare Disease Plan is firmly embedded.

Meetings to ensure that the input and the voice of the patient is represented in the ongoing work in relation to Rare Diseases, took place at regular intervals with the Rare Disease Task Force, the HSE National Clinical Programme for Rare Diseases and the Rare Disease Office. Continuing this practice, earlier this year (2021) I met with the HSE, The NRDO and The Rare Disease Taskforce and 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 key themes for inclusion in a roadmap for the coming period have been agreed.

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