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Emily’s Fight for Access to Life-Saving Drug | Cork News
A determined woman from County Kilkenny, Emily Felix, is fighting for her life in court after being denied timely access to a life-changing drug for her rare disease. Diagnosed with Friedreich’s ataxia at 12, now 28, Emily relies on a wheelchair and needs help with daily tasks—but she’s also a working professional and law student. The drug, omaveloxolone (Skyclarys), approved in EU countries for teens and up, could slow her disease’s progression. The HSE delayed its decision for over a year, despite the manufacturer submitting a new proposal. Emily’s legal team argues every day counts—delay…
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