526. Deputy Natasha Newsome Drennan asked the Minister for Health the engagements she has had with those advocating on behalf of people living with Friedreich's ataxia; and if she will make a statement on the matter. [46678/26]

Friedreich’s ataxia (FRDA) is a rare genetic neurological condition characterized by slowly progressive ataxia and neuropathy with onset usually in the teenage years.

In my capacity as Minister for Health I regularly meet with patient advocacy and representative groups, including those suffering from rare diseases. In addition officials in my Department, the HSE and CHI have regular engagement with patient advocacy and representative groups.

in relation to engagements with people advocating for Friedreich's Ataxia, I attended a briefing in Leinster House on Friedreich’s Ataxia earlier this year. 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.