Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 15 May, 2025

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2025 to 30 Apr, 2025

Specific Details Development of new National Strategy for Rare Diseases

Intended results Ministerial support for people living with rare diseases

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.

Informal communication (2-5)

Impromptu discussions on importance of publication and implementation of new National Rare Disease Strategy for Rare Diseases as side conversations at unrelated events

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)

Professor Mary Horgan Chief Medical Officer (Department of Health)