Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 21 Jan, 2026

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2025 to 31 Dec, 2025

Specific Details Implementation of National Rare Disease Strategy

Intended results Commence implementation of National Rare Disease Strategy and establish an Implementation Oversight group with patients/advocates included

Name of person primarily responsible for lobbying on this activity John McCormack

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.

Email (2-5)

Emails seeking update and information on establishment of the Implementation Oversight Group to monitor implementation of the National Rare Disease Strategy and role for patients & advocates in this group.

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.

Professor Mary Horgan Chief Medical Officer (Department of Health)