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 Seeking to highlight rare diseases during Ireland's EU Presidency in 2026 with an official event during the presidency

Intended results Commitment to highlight rare diseases during the upcoming EU Presidency by hosting an official event on 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.

Email (1)

Follow up email to Minister for Health and colleagues to highlight the benefits of hosting a rare disease conference as an official event during Ireland's term as EU Presidency

Informal communication (2-5)

Side conversations (at launch of NCTOG report) seeking to impress on influencers and decision makers the importance of including rare disease innovation in the EU Presidency agenda, not just from a health perspective but also as a platform to showcase the benefit of investment in innovation and support for industry in Ireland and across Europe.

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)

Bríd Murphy Adviser to Minister (Department of Health)

Stephen Foley Special Adviser (Department of Health)

Muiris O’Connor Assistant Secretary (Department of Health)