Beat News Interview: Kilkenny's Emily Felix on the Fight for Skyclarys
20 July - 16 mins explicit
Podcast Series
Beat News & Documentaries
Emily Felix from Kilkenny has spent almost two years campaigning for access to Skyclarys, the first treatment approved to slow the progression of Friedreich's Ataxia.
Last week, the HSE deferred a decision on funding the treatment, with a key meeting of the Rare Disease Technical Review Committee taking place tomorrow, Tuesday, July 21st.
Around 200 people in Ireland are living with the rare progressive neurological condition.
Emily spoke to Lily Kennedy about living with Friedreich's Ataxia, her fight for access to Skyclarys, and how the condition continues to progress while patients wait for access to the treatment.
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