Image: A poster to promote a demonstration taking place on Sunday, 23rd August at 12pm. Text reads: “We have Friedreich’s Ataxia. How much are our lives worth? Join us in calling for access to Skyclarys, the only licensed treatment for Friedreich’s Ataxia. Garden of Remembrance, march to Custom House Quay. Stand with patients and families. It’s time to reimburse Skyclarys.”
Press Release from Ataxia Foundation Ireland
Friedreich’s ataxia campaigners to demonstrate for Skyclarys reimbursement in Dublin this Sunday.
“Demonstrators will gather at the Garden of Remembrance in Dublin at 12pm on Sunday, 23 August to call on the HSE to reimburse Skyclarys, the first and only approved treatment for Friedreich’s Ataxia (FA).
FA is a rare, progressive neuromuscular condition that causes nerve damage, muscle weakness and mobility loss.
It is believed that there are around 200 people with FA in Ireland.
Skyclarys has been shown to slow the progression of FA. First approved by the European Medicines Agency in February 2024, it has now been over two years since evaluation began for Skyclarys reimbursement in Ireland.
At the original price, it would cost around €280,000 per patient per year, with a five-year budget impact of around €130m. But Biogen say they have come back with a second commercial offer that is comparable with other European countries.
Starting at 12pm on Sunday, 23 August in the Garden of Remembrance, the demonstration will head down to Customs House Quay, where there will be speeches by campaigners Niamh Ní Hoireabhaird, Erik Fitzgerald, Sinéad Maher, and Aoife Gavan. The conversation will be moderated by Emily Felix. Supported by Access For all Ireland and the Ataxia Foundation Ireland, the demonstration is being held in advance of the HSE Senior Leadership Team meeting on 25 August to make a final decision on the reimbursement of Skyclarys.
Campaigners remain hopeful that the drug will be approved.”
Image: A photo of campaigners gathered in front of the Dáil.
Find more information about this campaign and Ataxia Foundation Ireland’s work on their website.
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