Huntington's Disease Association of Ireland

Lobbying Organisation Huntington's Disease Association of Ireland

Date published 12 Jan, 2024

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 Sep, 2023 to 31 Dec, 2023

Specific Details To advocate for a coordinated specialist service for families affected by Huntington’s Disease. Specifically to seek support for a Huntington's Disease out-reach demonstrator project.

Intended results To secure support for the development of a coordinated specialist service for families affected by Huntington's Disease by continuing to highlight the complexity of this disease, the generational impact, the lack of appropriate coordinated services and the barriers preventing access to existing health and social care services

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)

HDAI met with Minister Rabbitte and officials from the Department of Health and the HSE to highlight the need for a specialist coordinated service for Huntington's disease. HDAI discussed the impact on families over generations and the perceived stigma and discrimination endured. In particular families need access to a responsive outreach service.

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.

Anne Rabbitte Minister of State (Department of Children, Equality, Disability, Integration and Youth)