Rare diseases

The summer’s health story isn’t going away A demonstration outside Leinster House, a letter signed by 47 members of Fianna Fáil’s parliamentary party, and now a face-to-face meeting with the company that makes the drug. Skyclarys has become one of the most politically awkward health stories of the summer, and it is not going away. […]

1 month ago

When will a decision on Skyclarys be made? The HSE Drugs Group meets on Tuesday to reconsider whether to fund Skyclarys, the first treatment shown to slow the progression of Friedreich’s Ataxia. Around 200 people in Ireland live with the rare neurological disease and have campaigned for the drug to be made available on the […]

2 months ago