Dáil Éireann Debate, Tuesday - 2 November 2021
890. Deputy Brendan Griffin asked the Minister for Health further to Parliamentary Questions Nos. 586, 587 and 588 of 12 October 2021, the specific themes that have been agreed for inclusion as part of the update of the National Rare Diseases Plan; and if he will make a statement on the matter. [52332/21]
View answerMany of the major recommendations of the National Rare Disease Plan have already been implemented. In late 2020, the National Clinical Programme for Rare Diseases was operationalised and incorporated into the National Rare Disease Office, who has become 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.
Building on the significant progress to date, a number of 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). Those themes identified for future progress, include: Patient Awareness; European Reference Networks; Research & Registries; Access to Services; Access to Medicines; Diagnosis; Education & Training and Legislation & Policy.
