SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Lobbying Organisation SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Date published 01 May, 2024

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2024 to 30 Apr, 2024

Specific Details Rare diseases and newborn screening of babies

Intended results Swift implementation of SMA and SCID in NBS bloodspot screening programme

Name of person primarily responsible for lobbying on this activity Jonathan W O'Grady

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)

To raise specific parliamentary questions on the subject of newborn screening

Email (1)

Requesting a meeting with the Minister for health, Stephen Donnelly, on the subject of newborn screening implementation

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.

Colm Burke TD (Dáil Éireann, the Oireachtas)

John Lahart TD (Dáil Éireann, the Oireachtas)

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

Neasa Hourigan TD (Dáil Éireann, the Oireachtas)

Stephen Donnelly Minister (Department of Health)