Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 20 Sep, 2023

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2023 to 31 Aug, 2023

Specific Details Meeting of cross party group on rare diseases - European Reference Networks

Intended results Minister for Health to provide financial support to recently established rare disease European Reference Networks to ensure appropriate care for people living with rare diseases in Ireland.

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 in AV Room with selection of TDs & Senators to explain importance rare disease European Reference Networks and to ask them to press Minister to allocate resources to ERNs.

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.

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

John Lahart TD (Dáil Éireann, the Oireachtas)

Erin McGreehan Senator (Seanad)

Denis Naughten TD (Dáil Éireann, the Oireachtas)

Michael Healy-Rae TD (Dáil Éireann, the Oireachtas)

Neasa Hourigan TD (Dáil Éireann, the Oireachtas)

Mark Daly Senator (Seanad)