Fighting Blindness (Fighting Blindness)

Lobbying Organisation Fighting Blindness

Date published 08 Jan, 2020

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2019 to 31 Dec, 2019

Specific Details Health Technology Assessment: we launched research to show the estimated cost to the State of people living with inherited retinal degeneration [IRDs].

Intended results For public representatives to attend the briefing session and become more informed and perhaps take into account findings in future assessing of the criteria for orphan drugs to be reframed to take into account the wellbeing and welfare costs of those living with IRDs.

Name of person primarily responsible for lobbying on this activity Neil Ward

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.

Event / Reception (1)

Launch event held at Buswells Hotel on 3 December. An invitation and reminders were emailed; and limited follow-up communication to determine RSVP to the guest list. Also asked if a government minister would formally accept the research document for a photocall opportunity.

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.

Paschal Donohoe Minister (Department of Finance)

Simon Harris Minister (Department of Health)

Finian McGrath Minister of State (Department of Employment Affairs and Social Protection)

Louise O'Reilly TD (Dáil Éireann, the Oireachtas)

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Michael Harty TD (Dáil Éireann, the Oireachtas)

Jim Daly Minister of State (Department of Health)

Helen McEntee Minister of State (Department of Foreign Affairs)

Stephen Donnelly TD (Dáil Éireann, the Oireachtas)

John Brassil TD (Dáil Éireann, the Oireachtas)

Anne Rabbitte TD (Dáil Éireann, the Oireachtas)

Bernard Durkan TD (Dáil Éireann, the Oireachtas)

Margaret Murphy O'Mahony TD (Dáil Éireann, the Oireachtas)

Kate O'Connell TD (Dáil Éireann, the Oireachtas)

Colm Burke Senator (Seanad)

John Dolan Senator (Seanad)

Rónán Mullen Senator (Seanad)

Keith Swanick Senator (Seanad)

Peter Ryan Councillor (Tipperary County Council)

Martin Conway Senator (Seanad)

Garret Ahearn Councillor (Tipperary County Council)

Mary Mitchell O’Connor Minister of State (Department of Education and Skills)

Gerald Nash Senator (Seanad)

Regina Doherty Minister (Department of Employment Affairs and Social Protection)

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

Kevin Humphreys Senator (Seanad)

Neasa Hourigan Councillor (Dublin City Council)