'I don't want my parents to bury another child': Friedreich’s Ataxia patients 'beg' HSE for drug
3 sources·Updated August 21, 2026
HSE Friedreich’s Ataxia drug
Covered by 3 sources
- Irish Independent Ireland·13h agoPeople suffering from rare disease ‘beg’ for life-changing medicine
Advocates and politicians are urging Government and the HSE to reimburse the cost of Friedreich’s ataxia drug Skyclarys
Read at Irish Independent Ireland → - Irish Examiner Ireland·23h agoPeople living with Friedreich’s ataxia beg HSE to approve drug
Skyclarys is the only drug approved for the treatment of Friedreich’s ataxia, a rare progressive neuromuscular condition affecting around 200 people in Ireland
Read at Irish Examiner Ireland → - The Journal·1d ago'I don't want my parents to bury another child': Friedreich’s Ataxia patients 'beg' HSE for drug
The HSE was against funding the potentially life-changing treatment, which costs €288,000 per patient per year.
Read at The Journal →
