Huntington's Disease Association of Ireland

20/08/2026

New Huntington’s disease (HD) trial begins! A Phase 1 study is testing SRP-1005, a huntingtin-lowering therapy given by injection under the skin. It’s early days, but this approach could add an important new arrow to the HD drug development quiver.

More details in this article: https://en.hdbuzz.net/a-shot-in-the-arm-for-htt-lowering-insightt-trial-begins-testing-srp-1005/

18/08/2026

Gene editing research continues to move forward in Huntington's disease. 🧬💙

In a new preclinical study, researchers developed a gene-editing approach that reduced harmful huntingtin protein fragments while preserving the healthy version of the gene—a strategy that could one day lead to more precise treatments.

Learn more here: https://bit.ly/4wFMJzJ

14/08/2026

A huge THANK YOU to Roscommon Credit Union for their generous support of our Joe Doran HD Awareness walk in July.

🌟 Donation Spotlight 🌟

📣Roscommon Credit Union is delighted to support the Huntington's Disease Association of Ireland as they hosted a charity and awareness walk on July 19th at Lough Key Forest and Activity Park, Co Roscommon.

🙏The HDAI is dedicated to assisting individuals affected by Huntington’s disease by helping them access necessary health and social services, providing crucial information to them and their healthcare providers and advocating for their rights.

🙏Additionally, they collaborate with various organisations to enhance the services and support available to those living with Huntington's disease and their families.

In the picture, is Patricia representing HDAI and Katrina of RCU.
Huntington's Disease Association of Ireland

12/08/2026

Professor Orla Hardiman, Consultant Neurologist writes in The Irish Times today:

"The benefits of proper centralised care for rare conditions are exemplified by the motor neuron disease programme. This contrasts starkly with care for Huntington’s disease, a genetic condition affecting around 1,000 people in Ireland."

HSE lack of national plan for conditions such as Huntington’s is false economy – The Irish Times https://share.google/V6UuD4mXzUcnSHvL8

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

Failure to act will not only lead to unnecessary hardship, but will also be costly

10/08/2026

While summer is still with us, we're already looking ahead to a full autumn for the Huntington's Disease community.

👉 The EFNA Conference in Dublin (25–26 September), bringing together neurology patients, organisations, clinicians and researchers to shape a more inclusive neurology landscape;

👉 The EHDN Clinical Research Congress in Krakow (22–24 October), with its strong focus on ongoing and upcoming HD clinical trials.

Take a moment to look ahead and save the dates:

🔗 eurohuntington.org/events

03/08/2026

Sinead, a member of a family impacted by HD and Professor Orla Hardiman, Consultant Neurologist spoke with Adam Maguire, This Week , RTE Radio 1 on 2/08/2026 about the critical need for a Huntington's Disease Care Pathway to ensure people affected by Huntington's disease receive early intervention, timely diagnosis and specialist care to manage this disease.
Please share and listen back:

Last month the HSE settled a case with a family affected by the delayed diagnosis of Huntington's Disease. Sinead's maternal grandfather was diagnosed in 2015; however, Sinead's mother, who began to display symptoms in 2010, did not receive a diagnosis until 2022. Adam spoke to Sinead and to consult...

03/08/2026

"We need to have structures and services in place where people who know this disease, managing the condition, pre-empting what might happen, walking the walk with people and families and making sure that we're putting structures in place pre-emptively and not cleaning up the mess afterwards," Professor Hardiman



HSE Ireland

The family of a woman who was diagnosed with Huntington's disease more than a decade after she began displaying symptoms has called for the HSE to implement a care pathway for the disease.

22/07/2026

The family of a woman who had a delayed diagnosis of a rare genetic disease has told the High Court about what was described as its "war with the health system" just to be heard.

22/07/2026

Shane Phelan Irish Independent reports:

"A High Court judge has severely criticised the lack of healthcare services for sufferers of a devastating progressive neurodegenerative disorder and called for the urgent implementation of a proposed care pathway by the HSE."

The family of a woman, who was undiagnosed and later misdiagnosed for several years, shared that the main purpose of the proceedings was to highlight serious deficiencies in the standard of care available to families affectedby

HSE settles lawsuit that highlighted ‘serious deficiencies’ in standard of care for hereditary disorder

11/07/2026

Wonderful to catch up with friends today at the gloriously sunny Lough Key Forest & Activity Park for our annual Joe Doran HD Awareness Walk.
https://www.idonate.ie/fundraiser/joedoranwalk2026

Thanks to everyone who supported the walk, with participants from Longford, Kildare, Limerick, Galway, Roscommon, Mayo, Leitrim and Sligo.

We are also grateful to our generous sponsors and congrats to happy prize winners!

Kilronan Castle Estate & Spa
Kellys Supervalu Boyle
Coach House Hotel
GreenRock Convenience Store Boyle
Lough Key Gardens Pure Honey