12/08/2026
Friedreich’s Ataxia is a rare, progressive neurological disease that gradually affects movement, coordination and independence. Around 200 people in Ireland live with it. Skyclarys is the first approved treatment for the condition, yet the HSE Drugs Group has recommended that it should not be reimbursed.
That may be a small number on a Government spreadsheet but it is 200 people, 200 families and countless loved ones whose lives are affected too.
There is something deeply wrong when the rarity of an illness can seemingly become part of the reason people are left fighting for treatment.
There’s an old warning that people stayed silent while others were singled out, until eventually there was no one left to speak.
We cannot only stand up when an issue affects thousands or when it affects our own family.
Sometimes the smaller the group, the louder the rest of us need to be.
Today, 200 people living with Friedreich’s Ataxia are asking to be heard.
We should stand with them.
.
It is absolutely disgraceful. People deserve the care they need. 💔
Around 200 people in Ireland are living with Friedreich’s Ataxia—a progressive, debilitating rare neurological disease. Today, the HSE Drugs Group recommended that Skyclarys, the only approved treatment for this condition, should NOT be covered by the state. 😡
Think about that. The FIRST and ONLY treatment that offers hope to patients living with this disease is being denied over cost negotiations.
Patients and families have been protesting outside Leinster House for months, begging for a chance at a better quality of life. The Rare Diseases Technology Review Group supported bringing this drug to Ireland, and both the EMA and FDA have already approved it. Yet, patients here are once again being left behind by bureaucracy.
The decision now rests with the HSE senior management team on August 25th.
With Ireland’s EU Presidency prioritizing rare diseases, this decision is being watched by the world. We cannot stand by and let 200 members of our community be told their quality of life isn't worth the funding.
Health care is a right, not a luxury.
Please stand with Friedreich’s Ataxia campaigners. Let's make sure the HSE hears you before August 25th. Email your TDs, Email the HSE. 🎗️👇
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Micheál Martin Simon Harris TD
HSE Ireland Roinn Sláinte, Department of Health