Dáil Éireann Debate, Thursday - 22 June 2023
386. Deputy John Paul Phelan asked the Minister for Health if a new liaison person within his Department has been appointed to oversee implementation of the national rare disease plan; if a review conducted by the former liaison person will be published; and if he will make a statement on the matter. [30429/23]
View answerIn February I announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.
The development of the new Plan is currently being progressed through the Office of the Chief Medical Officer in conjunction with the HSE's National Rare Disease Office, and will include a review of the previous National Rare Disease Plan 2014-2018.
This review will consider areas of the previous Plan that need to be further progressed, while also looking to the future and the needs of those patients and families living with a rare disease diagnosis.
An interim report on the National Rare Disease Plan 2014-2018 is published at the following link: www.gov.ie/en/publication/e45dd9-interim-report-on-national-rare-disease-plan-for-ireland-2014-2018/
