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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.
Post-Match: Life after Camogie and Football with Breege Nolan
Aoife looks at car insurance and getting your first car in Episode 4 of 'The Road Ahead'.
Featuring Will Croke from Kiely Gaule and Declan Norris of Hillside Motors.
All this week on Beat, we're shining a spotlight on the journey to a full driver's license.
In Episode Three of 'The Road Ahead', Rachael looks at tackling the driving test.
All this week, we're shining a spotlight on the journey to a full driver's license.
In Episode Two of 'The Road Ahead', we hear about getting behind the wheel for the first time and starting your 12 lessons.
From the publisher's feed
Quirky, current and important conversations for young people in the South East.
'Beat News & Documentaries' includes all of the latest features, docs and big interviews from Beat's News…