Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 19 Sep, 2023

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2023 to 31 Aug, 2023

Specific Details Rare disease European Reference Networks

Intended results Financial support for European Reference Networks

Name of person primarily responsible for lobbying on this activity Avril Daly

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)

In person meeting at Department of Health on July 25 2023 with Minister Donnelly and DoH officials to discuss need to provide adequate support and resources to 18 European Reference Networks across 5 hospitals in Ireland to enable them to provide care for people living with rare diseases in Ireland. Meeting also attended by clinicians and National Rare Diseases Office.

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.

Stephen Donnelly Minister (Department of Health)

John Lahart TD (Dáil Éireann, the Oireachtas)

Pádraig O'Sullivan TD (Dáil Éireann, the Oireachtas)