Latest / Cork News Today | 2 Min News | The Daily News Now!
Rare Disease Ireland Pushes for Skyclarys Access | Cork News
Rare Disease Ireland is making a bold move by publicly advocating for Skyclarys, the first drug approved to treat Friedreich’s ataxia — a rare, devastating condition with no cure. Facing steep pricing hurdles, they’re urging Ireland’s HSE to prioritize patient access through a “managed access” model, allowing treatment while more data is gathered. CEO Vicky McGrath stresses the urgent need to balance innovation with affordability, calling for greater transparency in how life-changing treatments are funded — especially for those with little time or options. Listen in comfort:Get a discount on…
The skinny
The skinny isn't ready yet — notes appear once the transcript is processed.