Dáil Éireann Debate, Tuesday - 28 November 2023
593. Deputy John Paul Phelan asked the Minister for Health to publish the number of unimplemented actions from the National Rare Disease Plan 2014-2018; to outline each unimplemented action, in tabular form; and if he will make a statement on the matter. [52095/23]
View answer594. Deputy John Paul Phelan asked the Minister for Health how his Department in reviewing the unimplemented actions of the National Rare Disease Plan 2014-2018; whether he intends to publish this review; and if he will make a statement on the matter. [52096/23]
View answer612. Deputy Denis Naughten asked the Minister for Health if he will outline the progress to date on each of the recommendations in the National Rare Disease Plan for Ireland 2014 - 2018; and if he will make a statement on the matter. [52177/23]
View answerI propose to take Questions Nos. 593, 594 and 612 together.
An update on the current state of each of the 2014-2018 National Rare Diseases plan’s 48 recommendations has been completed by the Department of Health and provides a moment-in-time update on each of the recommendations. While a number of areas for improvement remain, various actions have been implemented from the 2014-2018 plan and significant resources invested in this area in recent years.
Principal among those actions was the establishment of the National Rare Disease Office (NRDO) in the HSE. The NRDO is the national rare disease ‘coordination hub’ and the HSE main contact and driver of rare disease initiatives and projects. The NRDO is committed to informing, supporting and empowering people affected by rare conditions, their families/caregivers and healthcare professionals.
The HSE National Clinical Programme for Rare Diseases published the HSE ‘Model of Care for Transition from Paediatric to Adult Healthcare Providers in Rare Diseases’ in 2018, and the “Model of Care for Rare Diseases” in 2019. The work of the National Clinical Programme for Rare Diseases has now been mainstreamed into standard operations.
The review of the 2014-2018 Plan will inform the work of the Steering Group to develop the new Plan when it convenes in December. It is expected that the Review will be published as part of the Steering Group meeting documents in due course.
