Health | The efforts that are being made to meet the challenges of rare diseases, early diagnosis, and the requirement for rare/orphan disease drugs

QUESTION

To ask the Minister for Health the efforts that are being made to meet the challenges of rare diseases, early diagnosis; the requirement for rare/orphan disease drugs; and if he will make a statement on the matter.

REPLY

In February 2023, 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.

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 eight 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 Strategy will set out the vision for Rare Disease services in Ireland and the actions required to achieve this, while focusing on delivering positive change for people living with a rare disease in Ireland. The issues raised by the Deputy will be considered by the Steering Group in formulating the Strategy.