Muscular Dystrophy Society of Ireland GLC (Muscular Dystrophy Ireland)

Lobbying Organisation Muscular Dystrophy Society of Ireland GLC

Date published 18 Sep, 2025

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2025 to 31 Aug, 2025

Specific Details Campaign for timely assessment of Givinostat for Duchenne muscular dystrophy

Intended results Timely assessment of Givinostat for boys living with Duchenne muscular dystrophy

Name of person primarily responsible for lobbying on this activity Alan Breathnach

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? Asked MDI members and the public to email their TD/Senator urging their support by: attending a briefing on the campaign at the Audio-Visual Room, Leinster House on 11 June 2025; leveraging their role as elected representatives to highlight the importance of timely and planned action to avoid delays in reimbursement; and calling on the Government to uphold its commitment, as outlined in the Programme for Government, to ensure that patients have timely access to new and innovative treatments.

Was this lobbying done on behalf of a client? No

Mass communications

Email All Oireachtas Members Asked MDI members and the public to email their TD/Senator urging their support by: attending a briefing on the campaign at the Audio-Visual Room, Leinster House on 11 June 2025; leveraging their role as elected representatives to highlight the importance of timely and planned action to avoid delays in reimbursement; and calling on the Government to uphold its commitment, as outlined in the Programme for Government, to ensure that patients have timely access to new and innovative treatments.

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (2-5)

MDI CEO sought an opportunity to discuss the matter further with the Minister for Health.

Meeting (1)

MDI CEO met with Olivia Rooney TD to discuss the matter further.

Event / Reception (1)

Briefing on the campaign held at the Audio-Visual Room, Leinster House on Wednesday 11 June.

Designated public officials lobbied

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