2025-10-02 16:40:16 +0100
To: An Taoiseach, Micheál Martin, Department of Health, HSE, Jennifer Carroll McNeill, Department of Finance
Huntington's Disease families in Ireland - Show your support and sign for vital care
Families living with Huntington’s disease in Ireland have been neglected and failed for decades. Promises have been made — of care, of dignity, of action — but appropriate action has not been taken.
Now, with UniQure’s groundbreaking gene therapy offering real hope, Ireland must act. This is a historic opportunity — but without investment in specialist healthcare infrastructure, that hope will remain out of reach for too many.
We urgently call on you to establish the promised properly resourced Huntington’s Disease specialist multi-disciplinary teams across Ireland — modelled on the Scottish system — to deliver expert, coordinated care. These teams are vital not only for managing the complex needs of HD families today, but for ensuring the healthcare system is ready to deliver advanced therapies tomorrow.
You have the power to change the trajectory for hundreds of families.
Keep your promises. Fund the teams. Prepare for the future.
Keep your promises. Fund the teams. Prepare for the future.
Do not let Ireland fall behind. Every member of the Huntington's community, and the wider population affected by neurological conditions will be there to support you.
Why is this important?
Why This Matters — To Everyone
Huntington’s disease families in Ireland have been promised and then denied basic care and support. We are a small, relatively rich country and our healthcare system is failing those who need it as well as those who work in it.
Huntingtons Disease has NO specialist teams in Ireland. ONE Nurse for 800 people and their families with 3000 more living at risk. No coordinated services. And now, with a groundbreaking gene therapy on the way, our health service isn’t prepared to deliver it.
If the system can continue to ignore a disease as devastating as this, when there are things that can be done...what does that tell us? Time to speak as a group, as a country as citizens who care about one another.
Sign this petition to support families :
- Proper Huntingtons Disease care through specialist multi-disciplinary teams (like Scotland has - same population but a specialist team in all 7 major cities)
- A health system ready for advanced therapies like the Uniqure trial making the news
- Leadership that keeps its promises
Because a health service that fails us today will fail our tomorrows.