Known as the "cruellest disease" Huntington’s disease families in Ireland have been neglected and failed for decades. Promises have been made — of care, of dignity, of action — but action has not been taken.
Now, with UniQure’s groundbreaking gene therapy and other trials ongoing, offering real hope, Ireland must act. This is an historic opportunity — but without specialist healthcare infrastructure, Irish families will not benefit
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.
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.
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.
