Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 21 May, 2024

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2024 to 30 Apr, 2024

Specific Details Response to implementation report on Mazars review of reimbursement system

Intended results Revision of report to acknowledge unmet needs of rare disease community with respect to 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.

Email (1)

Email detailing concerns with planned implementation report following Mazars review of reimbursement system and its failure to address the challenges associated with delayed reimbursement of orphan medicines in Ireland.

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)