Dáil Éireann Debate, Tuesday - 28 November 2023
592. Deputy John Paul Phelan asked the Minister for Health to provide an update on the formulation of an updated national rare disease plan; if the plan will be published within the lifetime of this Government as per the Programme for Government; and if he will make a statement on the matter. [52094/23]
View answer611. Deputy Denis Naughten asked the Minister for Health the current status on the draft National Rare Disease Plan for the period post 2018; when this plan will be published; the reason for the delay in publishing the plan; and if he will make a statement on the matter. [52176/23]
View answerI propose to take Questions Nos. 592 and 611 together.
In February, on Rare Diseases Day, I announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.
Initial work for the new plan has commenced, and a Steering Group to progress the new plan will be convened in December.
The development of a new Plan will allow us to 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.
Regarding the launch and publishing of the New National Rare Diseases Plan, while it is expected to be launched by Q3 2024, it will be dependent on the work of the Steering Group in the development of the Plan.
