Written answers

Tuesday, 12 October 2021

Department of Health

Departmental Strategies

Photo of Ivana BacikIvana Bacik (Dublin Bay South, Labour)
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491. To ask the Minister for Health the status of his plans to appoint a senior official to manage liaison regarding the rare disease plan (details supplied). [49198/21]

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
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In 2020, the Department of Health underwent significant reconfiguration to respond to the challenges presented by the COVID-19 pandemic. Over the coming months the Department will be reorganised to meet health system priorities and this will be considered as part of that process.

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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