SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Lobbying Organisation SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG

Date published 07 Dec, 2022

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2022 to 31 Dec, 2022

Specific Details Rare diseases and newborn screening of babies

Intended results Expand number of conditions screened for in heelprick test

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? Yes

What is the directive you gave to the grassroots campaigners? Raise awareness regarding newborn screening

Was this lobbying done on behalf of a client? No

Mass communications

Email All Oireachtas Members Invited TDs to newborn screening of event, including a panel discussion, at the Mansion House on 6 December 2022.

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Event / Reception (1)

Invited politicians, members of the newborn screening advisory committee, members of the genetics and genomics steering group and any other people involved with an interest in newborn screening to newborn screening of event, including a panel discussion, at the Mansion House on 6 December 2022.

Designated public officials lobbied

There were no DPOs directly lobbied during this return period on this specific Subject Matter Area.