Richard Bruton
Ceist:508. Deputy Richard Bruton asked the Minister for Health to provide an update on the development of a national rare diseases strategy for Ireland; and if he will make a statement on the matter. [20225/24]
Amharc ar fhreagraWednesday, 8 May 2024
Ceisteanna (508)
Freagraí scríofa
In February, on Rare Diseases Day 2023, I announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.
Since then, a Rare Disease Policy unit has been established in my department. This unit liaises with the National Rare Disease Office in the HSE and relevant stakeholders.
A National Rare Disease Steering Group was established in December 2023, and it has met seven times since it first convened.
The Steering Group has been tasked with developing the new National Rare Disease Strategy and an associated Implementation Plan.
The New National Rare Disease Strategy is envisaged to be published in 2024, this will be dependent on the work of the Steering Group in the development of the Strategy.