Huntington's Disease Association of Ireland

Lobbying Organisation Huntington's Disease Association of Ireland

Date published 28 Jan, 2026

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep. 2025 to 31 Dec. 2025

Specific Details To highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathway for families impacted by Huntington's disease.

Intended results To highlight the complex nature of Huntington’s disease (HD) and the persistent impact it has on families over generations in order to gain political support for a national HD specialist mutli-disciplinary service with coordinated care, outreach and a dedicated care pathway.

Name of person primarily responsible for lobbying on this activity Patricia Towey

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? No

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Meeting (1)

Meeting with Minister for Health Jennifer Carroll McNeill to request her support for the National Clinical Care Programme for Neurology interim funding application for specialist posts for Huntington’s disease

Meeting (1)

Meeting with Deputy Martin Daly to highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathway for families impacted by Huntington's disease.

Email (1)

To ask the Minister of State for Equality Hildegarde Naughton for her assistance to ensure people living with complex neurodegenerative conditions, who self neglect as a result of their disease, are included in Pillar 4, Commitment 15 of National Human Rights Strategy for Disabled People .

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Jennifer Carroll MacNeill Minister (Department of Health)

Martin Daly TD (Dáil Éireann, the Oireachtas)

Hildegarde Naughton Minister of State (Department of Children, Equality, Disability, Integration and Youth)