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Friedreich’s ataxia: ‘We haven’t got time. We just simply need a chance’
Patients and families are calling on the HSE to fund Skyclarys, a treatment they say could help slow progression of the rare disease
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irishtimes.com
Timeline cronologica
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Friedreich’s ataxia: ‘We haven’t got time. We just simply need a chance’
Patients and families are calling on the HSE to fund Skyclarys, a treatment they say could help slow progression of the rare disease
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Decision due on HSE funding for treatment for rare genetic disorder
The drug omaveloxolone, branded as Skyclarys, was approved in the US for the treatment of the disease, followed by Europe
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HSE agrees to fund drug for patients with Friedreich’s ataxia
Omaveloxolone, branded as Skyclarys, has been approved in US and Europe for treatment of disease
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HSE decision on Friederich’s ataxia welcome, but highlights ever-present conundrum
Amid demand for best-in-class drugs, the State’s medicine bill is approaching €4bn annually