Huntington's Disease Association of Ireland

Lobbying Organisation Huntington's Disease Association of Ireland

Date published 09 Jan, 2023

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2022 to 31 Dec, 2022

Specific Details To advocate for a coordinated specialist service for families affected by Huntington’s Disease.

Intended results To secure a meeting with Ministers of State at the Department of Health to discuss issues affecting people with Huntington's Disease and their families including the generational impact, the lack of appropriate coordinated services, barriers preventing access to existing health services and to advocate for an essential coordinated specialist service for families impacted by Huntington's disease.

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)

Minister of State at the Department of Health and the Department of Children, Equality, Disability, Integration and Youth with special responsibility for Disability spoke and met family members at the Huntington's Disease Association of Ireland annual Members Meeting in September. HDAI discussed the impact on families over generations and the perceived stigma and discrimination endured. HDAI highlighted the need for a dedicated Huntington's Disease specialist service to support families to avail of essential health services.

Email (2-5)

To ask whether there has been any specific allocation for Huntington’s Disease specialist services in the budget

Email (1)

To request a meeting with Minister of State at the Department of Health with responsibility for Mental Health and Older People to discuss how access to mental health services for families impacted by Huntington’s Disease can be improved.

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 Rabitte Minister of State (Department of Health)

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

Mary Butler Minister of State (Department of Health)