Dáil Éireann Debate, Thursday - 21 September 2017
137. Deputy Richard Boyd Barrett asked the Minister for Health the position regarding the implementation of the National Rare Disease Plan for Ireland 2014-2018; and if he will make a statement on the matter. [39936/17]
View answerThe National Rare Disease Plan recommended that an Oversight Implementation Group of relevant stakeholders, including patients' groups, be established to oversee and monitor implementation of the plan's recommendations. This group was established by the Department of Health in 2015 and it has met on a number of occasions. One of the principal recommendations in the Plan was the establishment of a National Clinical Programme for Rare Diseases which was established in 2013 with Professor Eileen Treacy as the Clinical Lead. Over time among other functions the Programme is assisting with mapping and developing care pathways for rare diseases; facilitating timely access to centres of expertise – nationally and internationally; and developing care pathways with European Reference Centres for those ultra-rare disorders where there may not be sufficient expertise in Ireland.
The Plan contains a number of recommendations and I have asked the Health Service Executive to reply directly to the Deputy outlining the progress to date.
