Dáil Éireann Debate, Tuesday - 3 March 2026
788. Deputy Barry Ward asked the Minister for Health if her attention has been drawn to the concerns of families of people suffering from Friedrichs ataxia in relation to the difficulty in obtaining treatment in Ireland; and if she will make a statement on the matter. [16311/26]
View answer791. Deputy Barry Ward asked the Minister for Health the position regarding any engagement she has had with families or support groups for people suffering from Friedrichs ataxia in Ireland; and if she will make a statement on the matter. [16314/26]
View answerI propose to take Questions Nos. 788 and 791 together.
Friedreich’s ataxia (FRDA) is a rare genetic neurological condition characterized by slowly progressive ataxia and neuropathy with onset usually in the teenage years.
The Minister for Health regularly meets with patient advocacy and representative groups, including those suffering from rare diseases. In addition officials in the Department, the HSE and CHI have regular engagement with patient advocacy and representative groups.
The Minister for Health attended a briefing in Leinster House on Friedreich’s Ataxia on 24th February 2026. The briefing was led by a group of people who have been diagnosed with Friedreich’s Ataxia and their family members.
The briefing event showed the many challenges and obstacles that currently exist for those diagnosed with the illness, and the Department will resolve to ensure implementation of the National Rare Disease Strategy 2025 – 2030 and its vision, to ensure that all people living with a rare disease have access to equitable, inclusive, safe and cross-sectoral care throughout their life journey that will enable them to reach their full potential and to live their best lives.
Since the launch of the Strategy, an Implementation Oversight Group has been launched and met in February to begin work planning for the 11 recommendations. As implementation of the Strategy progresses, it is intended that patient representation is a key feature and will be embedded in all structures.
