Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 21 May, 2024

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2024 to 30 Apr, 2024

Specific Details Building awareness unmet needs of rare diseases community in Ireland

Intended results Inclusion of policies and plans to address needs of rare disease community in Ireland in SF document 'Priorities for Change in Health and Social Care' and future election manifesto

Name of person primarily responsible for lobbying on this activity Vicky McGrath

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 David Cullinane to raise awareness of challenges for people living with rare diseases and their families in Ireland.

Email (1)

Detailed mark-up of SF document 'Priorities for Change in Health and Social Care' to ensure unmet needs of people living with rare diseases are identified and addressed over coming period.

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.

David Cullinane TD (Dáil Éireann, the Oireachtas)