Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 04 May, 2022

Relevant Matter Legislation

Public Policy Area Health

Period 1 Jan, 2022 to 30 Apr, 2022

Specific Details Meetings regarding amendment to Health (Pricing and Supply of Medical Goods) Act 2013 for orphan mediciens

Intended results Amendment to existing legislation to accommodate reimbursement of orphan medicines.

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 hosted by Padraig O'Sullivan with various members of government and health committee in attendance to mark rare Disease Day on Thurs, Feb 24 at the Dail.

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)

Stephen Donnelly Minister (Department of Health)

Anne Rabbitte Minister of State (Department of Health)

Seán Crowe TD (Dáil Éireann, the Oireachtas)

Colm Burke TD (Dáil Éireann, the Oireachtas)

Cathal Crowe TD (Dáil Éireann, the Oireachtas)

Bernard Durkan TD (Dáil Éireann, the Oireachtas)

John Lahart TD (Dáil Éireann, the Oireachtas)

Martin Conway Senator (Seanad)