Huntington's Disease Association of Ireland

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.
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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

10/07/2026

We have some fabulous raffle prizes for our Joe Doran Huntington's Disease Awareness Walk in Lough Key Forest & Activity Park tomorrow at 11am.

Huge thanks to local businesses for their generous support for
Kilronan Castle Estate & Spa
Kellys Supervalu Boyle
Coach House Hotel
GreenRock Convenience Store Boyle
Lough Key and Gardens Pure Honey


VisitRoscommon
Boyle Today

04/07/2026

30/06/2026

Thete's still time to enter a raffle for this beautiful print:
www.idonate.ie/benbulbenprint

Want to WIN my most popular print (30x30'' on canvas ready to hang) and support a super important cause - Huntington's Disease Association of Ireland (HDAI). Click the link !! Thanks everyone !

30/06/2026

Factor-H is helping HD families affected by the Earthquake in Venezuela. Any donation goes directly the affected families

The situation in Venezuela after the earthquakes is dire. We have identified several HD families in La Guaira, the most affected city, and are mobilizing to help. We have created an emergency relief program to provide medications, food, clothes and shelter. Some families have lost their homes.

The families from Maracaibo are fine, but Caracas is badly affected and we are trying to identify all families in need. All donations will go directly to help HD families in the region.

If you can, click here to donate via credit card at the Factor-H website: https://lnkd.in/gN4N-Jt6

You can also donate directly to Factor-H via Zelle: [email protected] or Factor-h.org

Thank you for your solidarity. Factor-H team is ready in Caracas to help.

La situación en Venezuela tras los recientes terremotos es crítica. Hemos identificado varias familias con enfermedad de Huntington (HD) en La Guaira, la ciudad más afectada, y ya estamos movilizando ayuda. Hemos creado un programa de asistencia de emergencia para proporcionar medicamentos, alimentos, ropa y refugio. Algunas familias han perdido sus hogares.

Las familias de Maracaibo se encuentran bien, pero Caracas ha sido gravemente afectada y estamos trabajando para identificar a todas las familias que necesitan apoyo. Todas las donaciones se destinarán directamente a ayudar a las familias con enfermedad de Huntington en la región.

Si deseas colaborar, puedes hacer una donación con tarjeta de crédito a través del sitio web de Factor-H: https://lnkd.in/gN4N-Jt6

También puedes donar directamente a Factor-H mediante Zelle: [email protected]

Gracias por tu solidaridad. El equipo de Factor-H ya está en Caracas listo para brindar apoyo.

22/06/2026

On July 11th, from 11am, we will walk to remember Joe Doran and to show solidarity with the many families in Ireland impacted by , a relatively rare hereditary, neurodegenerative disease.

Lough Key Forest & Activity Park is a fabulous walking location in near Boyle, .

If you can't join us on the day you can support the walk at https://www.idonate.ie/fundraiser/joedoranwalk2026



Neurological Alliance of Ireland (NAI) Rare Diseases Ireland Anne Doran