Huntington's Disease Association of Ireland

17/11/2025

Ciara Doherty Newstalk speaks with Fiona, a family member impacted by and Niall Pender, Professor of Psychology at the Royal College of Surgeons in Ireland (RCSI), about the challenges of Huntington's disease

Fiona shares how Padraig her late husband, typically capable and relaxed, started to struggle with every day tasks.

Professor Pender suggests people seek help when they become concerned about changes to thinking or mood. Timely access to psychological support and reliable information helps manage symptoms and allows earlier intervention.

While access to necessary multi-disciplinary supports is challenging there is support available.
HSE Ireland
See www.huntingtons.ie for information.

Huntington's disease is a progressive brain disorder that affects people emotionally, mentally, and physically. Sufferers usually show symptoms in their thirties and forties. Unfortunately, there is currently no known cure for the condition.   Joining Ciara to reflect on the impact the disease can ...

17/11/2025

The Hard Shoulder Newstalk features a discussion on Huntington's Disease now. Please tune in.

17/11/2025

This Medical Independent article outlines the urgent need for specialist outreach care for families impacted by

"Ireland’s HD nursing service represents a paradigm shift: From fragmented, reactive care to integrated, proactive, and dignified support. It is a model that does more than treat disease; it restores visibility, voice, and value to those living with HD."

"It is vital that this model is expanded nationwide in order to transform invisibility into inclusion, despair into dignity, and care into connection."

Neurological Alliance of Ireland (NAI) Disability Federation of Ireland Rare Diseases Ireland Mental Health Reform Bloomfield Mental Health Services The Psychological Society of Ireland
HSE Ireland Roinn Sláinte, Department of Health Department of Children, Disability and Equality

The ongoing work in Ireland on improving service provision for Huntington’s disease is a blueprint for how to transform invisibility...

10/11/2025

Huntington's disease doesn't just affect the person who has the gene, but entire families.

Ern-Rnd European Reference Network for Rare Neurological Diseases have launched "Huntington's Family" a patient journey movie portraying the impact on the person and on each family member.

Rare Diseases Ireland Neurological Alliance of Ireland (NAI) Disability Federation of Ireland Carmichael Ireland Family Carers Ireland Bloomfield Mental Health Services Mental Health Reform

HSE Ireland
Roinn Sláinte, Department of Health
Department of Children, Disability and Equality

"That's the thing with this disease: It doesn't just affect the person who has the gene, but entire families." What Martha is referring here to, is the fact,...

28/10/2025

Derek Readman, HD Advocate and Huntington's Disease Association of Ireland Board Member speaks about the essential need for health literacy for people living with neurologica conditions.

Especially so for rare neurological diseases such as

Neurological Alliance of Ireland (NAI)
Rare Diseases Ireland
Disability Federation of Ireland

14/10/2025

Eva Woods PhD student at the McMackin Lab, is researching if brain measurements can detect very early damage caused by Huntington's Disease.

Eva won a 2025 HDBuzz Prize for her work, published by HDBuzz in September: 2025 : https://en.hdbuzz.net/2025-hdbuzz-prize-calm-before-the-storm-early-clues-of-huntingtons-disease-found-in-brainwaves/ – HDBuzz

The McMackin lab wish to thank every volunteer who has contributed to this study to date.

Eva is now seeking volunteers for the study who have received a positive gene test result for HD.

You can contact Eva Woods at : https://www.mcmackinlab.com/current-projects/huntingtons-disease

Neurological Alliance of Ireland (NAI) Rare Diseases Ireland Neuroscience Ireland

14/10/2025

HDAI was proud to be represented by Board members at the recent European Huntington Association Conference in Bucharest.

The conference provided an opportunity to gain fresh insights into Huntington’s disease care across Europe. The session “Life Choices & Communication in HD” was particularly powerful, offering perspectives through personal accounts that reinforced the importance of lived experience in shaping services and policy.

Ireland’s current landscape, with minimal dedicated HD services, stands in stark contrast to several European countries. Engaging with delegates from other nations provided valuable understanding of integrated, multidisciplinary approaches—particularly models established in the Netherlands—which offer a blueprint for effective service delivery. These learnings will inform HDAI’s ongoing advocacy for improved access and specialist care in Ireland.

The networking environment fostered meaningful dialogue with clinicians, patient advocates, family members, and industry representatives. Such collaboration is crucial in tackling both medical and psychosocial aspects of HD and advancing the collective mission to improve quality of life.

Significantly, the conference was preceded by the announcement of headline clinical trial results from uniQure, demonstrating a 75% reduction in the progression of Huntington’s. This breakthrough exemplifies the potential impact of continued innovation and international cooperation in rare disease research.

HDAI remains committed strengthening to achieve access to specialised care for the HD community in Ireland.

08/10/2025

We welcome the fantastic news from yesterday’s Budget of €3m dedicated investment in community neuro-rehabilitation teams in direct response to our 2025 campaign.

This is an extremely successful outcome and we want to take this opportunity to pay tribute to our fantastic campaign spokespeople, Eamon, Eugene, Bernadette and Liam together with all our member organisations and everyone who supported this campaign.

The NAI Press Release is available to read on our website at https://tinyurl.com/mr296jdu

06/10/2025

Josh Halliday, North of England Editor at The Guardian speaks about the impact of on his family.

"It's an incredibly lonely illness, it's poorly
understood".

"It's one thing to say your parent has a neurodegenerative disease but it's a whole other thing to say I have a 50% chance of getting this myself"

Guardian’s Josh Halliday talks about Huntington’s disease, the impact it has had on his family and the hope there may now be a treatment

05/10/2025

A significant number of people living with
go undiagnosed or are misdiagnosed for many years despite the availability of a conclusive test. Parkinson's disease, alzheimer's
disease, functional neurological disorder and schizophrenia are among the misdiagnoses people receive.

The lack of specialist outreach services for this complex neurodegenerative disease contributes to poor and fragmented care.

There are no dedicated Huntington's disease clinics in Ireland. One Advanced Nurse Practitioner for HD currently tries to support families in crisis situations throughout the country while
managing an ever increasing workload. Scotland, with a similar population have Huntington's Disease dedicated clinics and outreach specialists throughout the country.

We need to treat HD patients where they are, with supportive expertise, and with consideration for the complexity of symptoms and for the psychological burden faced by the entire family.

Doctors left a man and his family in the dark for years about his diagnosis with Huntington’s disease, a rare and devastating progressive neurodegenerative disorder passed from one generation to the next.

05/10/2025

On this day in 1967, Woody Guthrie passed away at the age of 55 due to complications from Huntington's disease. As we reflect on the profound impact he had on American music and social consciousness, we are reminded of the importance of preserving his spirit and message. At the Woody Guthrie Center, we invite you to join us in honoring his memory, not just today but every day, as we continue to champion his ideals of social justice, equality and the power of music to inspire change.

“Woody lives and I’m glad.” – John Lennon

03/10/2025

Amanda asks that people support and share her petition calling for vital services for families affected by in Ireland

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 spec...