We made progress for boys with DMD. Now it’s time to support people with FA!

Together, we showed that a strong community can make a difference by helping secure access to Givinostat for boys living with Duchenne muscular dystrophy – now it’s time to unite behind people living with Friedreich’s Ataxia and support access to Skyclarys.

On Tuesday 14 July, the HSE Drugs Group is due to decide whether to reimburse Skyclarys – the first approved treatment for Friedreich’s Ataxia. Show your support for families with FA by liking and sharing this post.

Friedreich’s Ataxia is a progressive, life-limiting inherited condition that affects coordination, balance, mobility, muscle strength, and sensation. It can also lead to complications such as heart disease, scoliosis, diabetes, and difficulties with speech and swallowing, significantly impacting daily life, health, and overall quality of life.

We are advocating for urgent access to Skyclarys. For individuals and families affected across Ireland, timely access to this treatment is of utmost importance. Families understand that processes must be followed, but what we are asking for now is urgency, transparency and clear timelines. Delays in reimbursement decisions can allow the condition to worsen permanently, leading to long-term effects on health and wellbeing. Whatever the outcome of this meeting, there must be no unnecessary delays.

On Tuesday 14 July at 2pm, people living with rare diseases and ataxia – along with their families and supporters – will gather outside Dáil Éireann to demand fair access to life‑changing treatments. If you can, come along to show your solidarity with the rare disease and ataxia community. If you can’t attend, please share this post to help amplify their voices.