Dáil Éireann Debate, Thursday - 21 October 2021
320. Deputy Colm Burke asked the Minister for Health when his Department plans to publish a successor strategy for rare diseases following the expiration of the National Rare Disease Plan for Ireland in 2018; the work that is ongoing in this regard; and if he will make a statement on the matter. [51819/21]
Amharc ar fhreagraIn 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, have taken 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.
