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Skyclarys Decision Shakes Rare Disease Community | Cork News
Friedreich’s ataxia patients and families are sounding the alarm as Ireland’s HSE Drugs Group recommends against covering Skyclarys, a life-changing drug for just 200 people — calling the potential denial “profoundly dehumanizing.” For Emily Felix, 28, diagnosed at 12, it’s a lifeline against a disease that stole her independence; for others, it’s hope amid heartbreaking loss. Doctors say it’s safe and effective, with patients reporting renewed energy and stability. Politicians are urging approval, arguing quality of life must trump cost — and the final decision rests with HSE senior…
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