Novartis Gene Therapies Gmbh (Novartis Gene Therapies)

Lobbying Organisation Novartis Gene Therapies Gmbh

Date published 12 Dec, 2022

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2022 to 31 Dec, 2022

Specific Details Novartis Gene Therapies financially supported an event organised by SMA Ireland in the Mansion House to advocate for the addition of more rare diseases to Ireland’s newborn screening programme. The event coincided with the timing of the second annual call for submissions to the National Screening Advisory Committee on expansion of healthcare screening in Ireland. The panel consisted of NGOs (SMA Ireland and Rare Diseases Ireland), patient advocate (Mr David Ryan) and clinician (Prof Declan O’ Ro

Intended results The intended outcome of the event was to raise awareness and engage relevant stakeholders on the need to add more rare diseases to Ireland’s newborn screening programme.

Name of person primarily responsible for lobbying on this activity Jonathan O’ Grady, Director, SMA Ireland with event management assistance from Red Flag Consulting.

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?) Yes

Current or Former Designated Public Official(s)

Deirdre Grant (Former DPO) Special Advisor (Department of Education)

Did you manage or direct a grassroots campaign? Yes

What is the directive you gave to the grassroots campaigners? SMA Ireland directed its members to contact their local politicians to encourage attendance at the event. SMA Ireland invited all panellists and reached out directly to the Chair of the NSAC to invite him to speak at the event.

Was this lobbying done on behalf of a client? No

Mass communications

Email All Local Authority Members Red Flag Consulting, on behalf of SMA Ireland, issued email invitations to politicians, and healthcare executives

Phone call All Local Authority Members Red Flag Consulting, on behalf of SMA Ireland, made phone calls to politicians and healthcare executives to follow up on email invitations sent.

Event / Reception All Local Authority Members SMA Ireland hosted an event as described above.

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (51-100)

Red Flag Consulting, on behalf of SMA Ireland, issued email invitations to politicians, and healthcare executives.

Phone call (31-50)

Red Flag Consulting, on behalf of SMA Ireland, made phone calls to politicians and healthcare executives to follow up on email invitations sent.

Event / Reception (1)

SMA Ireland hosted an event as described above.

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.

Deirdre Clune MEP (European Parliament)

Billy Kelleher MEP (European Parliament)

Peter Burke Minister of State (Department of Housing, Local Government and Heritage)

Anne Rabbitte Minister of State (Department of Health)

Frank Feighan Minister of State (Department of Health)

David Cullinane TD (Dáil Éireann, the Oireachtas)

Michael Collins TD (Dáil Éireann, the Oireachtas)

Holly Cairns TD (Dáil Éireann, the Oireachtas)

Sorca Clarke TD (Dáil Éireann, the Oireachtas)

Micheál Carrigy Senator (Seanad)

Robbie Gallagher Senator (Seanad)

Frances Black Senator (Seanad)

Lorraine Clifford-Lee Senator (Seanad)

Martin Conway Senator (Seanad)

Annie Hoey Senator (Seanad)

Seán Kyne Senator (Seanad)

David Norris Senator (Seanad)

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

Cormac Devlin TD (Dáil Éireann, the Oireachtas)

Jennifer Carroll MacNeill TD (Dáil Éireann, the Oireachtas)

Ossian Smyth TD (Dáil Éireann, the Oireachtas)

Richard Boyd Barrett TD (Dáil Éireann, the Oireachtas)

Leo Varadkar TD (Dáil Éireann, the Oireachtas)

Paul Donnelly TD (Dáil Éireann, the Oireachtas)

Roderic O'Gorman TD (Dáil Éireann, the Oireachtas)

Chris Andrews TD (Dáil Éireann, the Oireachtas)

Eamon Ryan TD (Dáil Éireann, the Oireachtas)

Pauline Tully TD (Dáil Éireann, the Oireachtas)

Colm Burke TD (Dáil Éireann, the Oireachtas)

Mick Barry TD (Dáil Éireann, the Oireachtas)

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

Thomas Gould TD (Dáil Éireann, the Oireachtas)

David Stanton TD (Dáil Éireann, the Oireachtas)

Seán Sherlock TD (Dáil Éireann, the Oireachtas)

Jennifer Murnane O'Connor TD (Dáil Éireann, the Oireachtas)

John McGuinness TD (Dáil Éireann, the Oireachtas)

Malcolm Noonan TD (Dáil Éireann, the Oireachtas)

Brendan Smith TD (Dáil Éireann, the Oireachtas)

Cathal Crowe TD (Dáil Éireann, the Oireachtas)

Joe Carey TD (Dáil Éireann, the Oireachtas)

Michael McNamara TD (Dáil Éireann, the Oireachtas)

Violet Anne Wynne TD (Dáil Éireann, the Oireachtas)

Aindrias Moynihan TD (Dáil Éireann, the Oireachtas)

Michael Creed TD (Dáil Éireann, the Oireachtas)

Barry Cowen TD (Dáil Éireann, the Oireachtas)

Brian Stanley TD (Dáil Éireann, the Oireachtas)

Charles Flanagan TD (Dáil Éireann, the Oireachtas)

Seán Fleming TD (Dáil Éireann, the Oireachtas)

Danny Healy-Rae TD (Dáil Éireann, the Oireachtas)

Michael Healy-Rae TD (Dáil Éireann, the Oireachtas)

Norma Foley Minister (Department of Education)

Pa Daly TD (Dáil Éireann, the Oireachtas)

Catherine Connolly TD (Dáil Éireann, the Oireachtas)

Éamon Ó Cuív TD (Dáil Éireann, the Oireachtas)

Hildegarde Naughton TD (Dáil Éireann, the Oireachtas)

Mairéad Farrell TD (Dáil Éireann, the Oireachtas)

Noel Grealish TD (Dáil Éireann, the Oireachtas)

Jennifer Whitmore TD (Dáil Éireann, the Oireachtas)

John Brady TD (Dáil Éireann, the Oireachtas)

Simon Harris TD (Dáil Éireann, the Oireachtas)

Stephen Donnelly TD (Dáil Éireann, the Oireachtas)

Steven Matthews TD (Dáil Éireann, the Oireachtas)

Brendan Howlin TD (Dáil Éireann, the Oireachtas)

James Browne TD (Dáil Éireann, the Oireachtas)

Johnny Mythen TD (Dáil Éireann, the Oireachtas)

Paul Kehoe TD (Dáil Éireann, the Oireachtas)

Verona Murphy TD (Dáil Éireann, the Oireachtas)

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Jackie Cahill TD (Dáil Éireann, the Oireachtas)

Martin Browne TD (Dáil Éireann, the Oireachtas)

Mattie McGrath TD (Dáil Éireann, the Oireachtas)

Michael Lowry TD (Dáil Éireann, the Oireachtas)

Dara Calleary TD (Dáil Éireann, the Oireachtas)

Michael Ring TD (Dáil Éireann, the Oireachtas)

Rose Conway-Walsh TD (Dáil Éireann, the Oireachtas)

Claire Kerrane TD (Dáil Éireann, the Oireachtas)

Denis Naughten TD (Dáil Éireann, the Oireachtas)

Darren O'Rourke TD (Dáil Éireann, the Oireachtas)

Helen McEntee Minister (Department of Justice)

Helen McEntee TD (Dáil Éireann, the Oireachtas)

Thomas Byrne TD (Dáil Éireann, the Oireachtas)

Catherine Martin TD (Dáil Éireann, the Oireachtas)

Catherine Martin Minister (Department of Tourism, Culture, Arts, Gaeltacht, Sport and Media)

Josepha Madigan TD (Dáil Éireann, the Oireachtas)

Josepha Madigan Minister of State (Department of Education)

Neale Richmond TD (Dáil Éireann, the Oireachtas)

Gary Gannon TD (Dáil Éireann, the Oireachtas)

Mary Lou McDonald TD (Dáil Éireann, the Oireachtas)

Neasa Hourigan TD (Dáil Éireann, the Oireachtas)

Paschal Donohoe TD (Dáil Éireann, the Oireachtas)

Dessie Ellis TD (Dáil Éireann, the Oireachtas)

Róisín Shorthall TD (Dáil Éireann, the Oireachtas)

Fergus O'Dowd TD (Dáil Éireann, the Oireachtas)

Ged Nash TD (Dáil Éireann, the Oireachtas)

Imelda Munster TD (Dáil Éireann, the Oireachtas)

Peter Fitzpatrick TD (Dáil Éireann, the Oireachtas)

Ruairí Ó Murchú TD (Dáil Éireann, the Oireachtas)

Eoin Ó Broin TD (Dáil Éireann, the Oireachtas)

Kieran O'Donnell TD (Dáil Éireann, the Oireachtas)

Maurice Quinlivan TD (Dáil Éireann, the Oireachtas)

Willie O'Dea TD (Dáil Éireann, the Oireachtas)

Colm Brophy TD (Dáil Éireann, the Oireachtas)

Francis Noel Duffy TD (Dáil Éireann, the Oireachtas)

John Lahart TD (Dáil Éireann, the Oireachtas)

Paul Murphy TD (Dáil Éireann, the Oireachtas)

Seán Crowe TD (Dáil Éireann, the Oireachtas)

Cathal Berry TD (Dáil Éireann, the Oireachtas)

Martin Heydon TD (Dáil Éireann, the Oireachtas)

Patricia Ryan TD (Dáil Éireann, the Oireachtas)

Seán Ó Fearghaíl TD (Dáil Éireann, the Oireachtas)

Breda Smyth Interim Chief Medical Officer (Department of Health)

Michael Walsh CEO (Waterford City and County Council)