Cystinosis Ireland Ltd (Cystinosis Ireland Ltd)

Lobbying Organisation Cystinosis Ireland Ltd

Date published 20 Jan, 2022

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2021 to 31 Dec, 2021

Specific Details Submission to the National Screening Advisory Committee to include cystinosis in the national newborn blood spot screening programme (heel prick test).

Intended results To include cystinosis in the national newborn blood spot screening programme (heel prick test)

Name of person primarily responsible for lobbying on this activity Anne Marie O'Dowd

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.

Submission (1)

Submission to the Newborn Screening Advisory Committee to include cystinosis in the national newborn blood spot screening programme (heel prick test).

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)