Rare Diseases Ireland

Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health; Muiris O’Connor (Assistant Secretary), Department of Health; Bríd Murphy (Adviser to Minister), Department of Health; Stephen Foley (Special Adviser), Department of Health

Intent: Support to host a rare disease themed Associated Presidency Event as part of Ireland's Presidency of the Council of the European Union 2026.

Methods: Email

Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health

Intent: Support from Ireland for proposal to reinstate the Operating Grants for Health NGOs at the EU

Methods: Email

Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health; Bríd Murphy (Adviser to Minister), Department of Health; Stephen Foley (Special Adviser), Department of Health; Muiris O’Connor (Assistant Secretary), Department of Health

Intent: Commitment to highlight rare diseases during the upcoming EU Presidency by hosting an official event on Rare Diseases.

Methods: EmailInformal communication

Politician(s) lobbied: Professor Mary Horgan (Chief Medical Officer), Department of Health

Intent: Commence implementation of National Rare Disease Strategy and establish an Implementation Oversight group with patients/advocates included

Methods: Email

Politician(s) lobbied: Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Anne Rabbitte (Senator), Seanad; Peter Burke (Minister), Department of Enterprise, Trade and Employment; Erin McGreehan (TD), Dáil Éireann, the Oireachtas; Teresa Costello (Senator), Seanad; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Eileen Lynch (Senator), Seanad; Maria Byrne (Senator), Seanad; Danny Healy-Rae (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Jennifer Murnane O'Connor (Minister of State), Department of Health; Malcolm Byrne (TD), Dáil Éireann, the Oireachtas

Intent: Acknowledgement of the difficulties getting access to orphan medicines and revision of policies and systems to reduce and eliminate the gaps and delays in the system

Methods: Meeting

Politician(s) lobbied: Nicole Ryan (Senator), Seanad; Teresa Costello (Senator), Seanad; Tom Clonan (Senator), Seanad; Maria Byrne (Senator), Seanad; Manus Boyle (Senator), Seanad; Marie Sherlock (TD), Dáil Éireann, the Oireachtas; Peter Roche (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Martin Daly (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Sorca Clarke (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Pádraig Rice (TD), Dáil Éireann, the Oireachtas

Intent: Inclusion of rare disease topics on schedule for Health Committee meetings.

Methods: Email

Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health; Stephen Foley (Special Adviser), Department of Health; Muiris O’Connor (Assistant Secretary), Department of Health; Simon Harris (Tánaiste and Minister), Department of Foreign Affairs; Thomas Byrne (Minister of State), Department of the Taoiseach; James Lawless (Minister), Department of Further and Higher Education, Research, Innovation and Science; Peter Burke (Minister), Department of Enterprise, Trade and Employment; Catherine Ardagh (TD), Dáil Éireann, the Oireachtas; John Connolly (TD), Dáil Éireann, the Oireachtas; Ryan O'Meara (TD), Dáil Éireann, the Oireachtas; Malcolm Byrne (TD), Dáil Éireann, the Oireachtas; Réada Cronin (TD), Dáil Éireann, the Oireachtas; Shane Moynihan (TD), Dáil Éireann, the Oireachtas; Erin McGreehan (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Paul Daly (Senator), Seanad; Maria Byrne (Senator), Seanad; Anne Rabbitte (Senator), Seanad; Teresa Costello (Senator), Seanad; Mark Ward (TD), Dáil Éireann, the Oireachtas; Martin Daly (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Eileen Lynch (Senator), Seanad; Eamon Scanlon (TD), Dáil Éireann, the Oireachtas; Seamus McGrath (TD), Dáil Éireann, the Oireachtas; Ollie Crowe (Senator), Seanad; Margaret Murphy O'Mahony (Senator), Seanad; Danny Healy-Rae (TD), Dáil Éireann, the Oireachtas; Eileen Flynn (Senator), Seanad; Pauline Tully (Senator), Seanad; Colm Burke (TD), Dáil Éireann, the Oireachtas; Brendan Smith (TD), Dáil Éireann, the Oireachtas; Eoin Hayes (TD), Dáil Éireann, the Oireachtas; Kiera Keogh (TD), Dáil Éireann, the Oireachtas

Intent: Inclusion of rare diseases as a priority for Ireland to showcase during Ireland's EU Presidency in 2026.

Methods: MeetingEmailLetter

Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health; Professor Mary Horgan (Chief Medical Officer), Department of Health

Intent: Ministerial support for people living with rare diseases

Methods: Informal communication

Politician(s) lobbied: Malcolm Byrne (TD), Dáil Éireann, the Oireachtas; Eileen Lynch (Senator), Seanad; Jennifer Carroll MacNeill (Minister), Department of Health; Martin Daly (TD), Dáil Éireann, the Oireachtas; Ryan O'Meara (TD), Dáil Éireann, the Oireachtas; Eamon Scanlon (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Seamus McGrath (TD), Dáil Éireann, the Oireachtas; Ollie Crowe (Senator), Seanad; Margaret Murphy O'Mahony (Senator), Seanad; Danny Healy-Rae (TD), Dáil Éireann, the Oireachtas; Eileen Flynn (Senator), Seanad; Erin McGreehan (TD), Dáil Éireann, the Oireachtas; Pauline Tully (Senator), Seanad; Colm Burke (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Aengus Ó Snodaigh (TD), Dáil Éireann, the Oireachtas; Aidan Farrelly (TD), Dáil Éireann, the Oireachtas; Aindrias Moynihan (TD), Dáil Éireann, the Oireachtas; Aisling Dempsey (TD), Dáil Éireann, the Oireachtas; Alan Dillon (TD), Dáil Éireann, the Oireachtas; Alan Kelly (TD), Dáil Éireann, the Oireachtas; Albert Dolan (TD), Dáil Éireann, the Oireachtas; Ann Graves (TD), Dáil Éireann, the Oireachtas; Barry Heneghan (TD), Dáil Éireann, the Oireachtas; Barry Ward (TD), Dáil Éireann, the Oireachtas; Brendan Smith (TD), Dáil Éireann, the Oireachtas; Brian Brennan (TD), Dáil Éireann, the Oireachtas; Brian Stanley (TD), Dáil Éireann, the Oireachtas; Carol Nolan (TD), Dáil Éireann, the Oireachtas; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; Catherine Ardagh (TD), Dáil Éireann, the Oireachtas; Catherine Callaghan (TD), Dáil Éireann, the Oireachtas; Catherine Connolly (TD), Dáil Éireann, the Oireachtas; Cathy Bennett (TD), Dáil Éireann, the Oireachtas; Charles Ward (TD), Dáil Éireann, the Oireachtas; Charlie McConalogue (TD), Dáil Éireann, the Oireachtas; Christopher O'Sullivan (TD), Dáil Éireann, the Oireachtas; Cian O'Callaghan (TD), Dáil Éireann, the Oireachtas; Ciarán Ahern (TD), Dáil Éireann, the Oireachtas; Claire Kerrane (TD), Dáil Éireann, the Oireachtas; Colm Brophy (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Conor D McGuinness (TD), Dáil Éireann, the Oireachtas; Conor Sheehan (TD), Dáil Éireann, the Oireachtas; Cormac Devlin (TD), Dáil Éireann, the Oireachtas; Danny Healy-Rae (TD), Dáil Éireann, the Oireachtas; Dara Calleary (TD), Dáil Éireann, the Oireachtas; Darragh O'Brien (TD), Dáil Éireann, the Oireachtas; Darren O'Rourke (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; David Maxwell (TD), Dáil Éireann, the Oireachtas; Denise Mitchell (TD), Dáil Éireann, the Oireachtas; Dessie Ellis (TD), Dáil Éireann, the Oireachtas; Donna McGettigan (TD), Dáil Éireann, the Oireachtas; Donnchadh Ó Laoghaire (TD), Dáil Éireann, the Oireachtas; Duncan Smith (TD), Dáil Éireann, the Oireachtas; Eamon Scanlon (TD), Dáil Éireann, the Oireachtas; Edward Timmins (TD), Dáil Éireann, the Oireachtas; Emer Currie (TD), Dáil Éireann, the Oireachtas; Emer Higgins (TD), Dáil Éireann, the Oireachtas; Eoghan Kenny (TD), Dáil Éireann, the Oireachtas; Eoin Ó Broin (TD), Dáil Éireann, the Oireachtas; Eoin Hayes (TD), Dáil Éireann, the Oireachtas; Erin McGreehan (TD), Dáil Éireann, the Oireachtas; Fionntán Ó Súilleabháin (TD), Dáil Éireann, the Oireachtas; Frank Feighan (TD), Dáil Éireann, the Oireachtas; Gary Gannon (TD), Dáil Éireann, the Oireachtas; George Lawlor (TD), Dáil Éireann, the Oireachtas; Gillian Toole (TD), Dáil Éireann, the Oireachtas; Grace Boland (TD), Dáil Éireann, the Oireachtas; Helen McEntee (TD), Dáil Éireann, the Oireachtas; Helen McEntee (TD), Dáil Éireann, the Oireachtas; Hildegarde Naughton (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Ivana Bacik (TD), Dáil Éireann, the Oireachtas; Jack Chambers (TD), Dáil Éireann, the Oireachtas; James Browne (TD), Dáil Éireann, the Oireachtas; James Geoghegan (TD), Dáil Éireann, the Oireachtas; James Lawless (TD), Dáil Éireann, the Oireachtas; James O'Connor (TD), Dáil Éireann, the Oireachtas; Jen Cummins (TD), Dáil Éireann, the Oireachtas; Jennifer Murnane O'Connor (TD), Dáil Éireann, the Oireachtas; Jennifer Whitmore (TD), Dáil Éireann, the Oireachtas; Jim O'Callaghan (TD), Dáil Éireann, the Oireachtas; Joanna Byrne (TD), Dáil Éireann, the Oireachtas; Joe Cooney (TD), Dáil Éireann, the Oireachtas; Joe Neville (TD), Dáil Éireann, the Oireachtas; John Brady (TD), Dáil Éireann, the Oireachtas; John Clendennen (TD), Dáil Éireann, the Oireachtas; John Connolly (TD), Dáil Éireann, the Oireachtas; John Cummins (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; John McGuinness (TD), Dáil Éireann, the Oireachtas; John Paul O'Shea (TD), Dáil Éireann, the Oireachtas; Johnny Guirke (TD), Dáil Éireann, the Oireachtas; Johnny Mythen (TD), Dáil Éireann, the Oireachtas; Kiera Keogh (TD), Dáil Éireann, the Oireachtas; Ken O'Flynn (TD), Dáil Éireann, the Oireachtas; Kevin Boxer Moran (TD), Dáil Éireann, the Oireachtas; Kieran O'Donnell (TD), Dáil Éireann, the Oireachtas; Liam Quaide (TD), Dáil Éireann, the Oireachtas; Louis O'Hara (TD), Dáil Éireann, the Oireachtas; Máire Devine (TD), Dáil Éireann, the Oireachtas; Mairéad Farrell (TD), Dáil Éireann, the Oireachtas; Malcolm Byrne (TD), Dáil Éireann, the Oireachtas; Marian Harkin (TD), Dáil Éireann, the Oireachtas; Marie Sherlock (TD), Dáil Éireann, the Oireachtas; Mark Wall (TD), Dáil Éireann, the Oireachtas; Mark Ward (TD), Dáil Éireann, the Oireachtas; Martin Daly (TD), Dáil Éireann, the Oireachtas; Martin Heydon (TD), Dáil Éireann, the Oireachtas; Martin Kenny (TD), Dáil Éireann, the Oireachtas; Mary Butler (TD), Dáil Éireann, the Oireachtas; Mary Lou McDonald (TD), Dáil Éireann, the Oireachtas; Matt Carthy (TD), Dáil Éireann, the Oireachtas; Mattie McGrath (TD), Dáil Éireann, the Oireachtas; Maurice Quinlivan (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Michael Collins (TD), Dáil Éireann, the Oireachtas; Michael Fitzmaurice (TD), Dáil Éireann, the Oireachtas; Michael Healy-Rae (TD), Dáil Éireann, the Oireachtas; Michael Lowry (TD), Dáil Éireann, the Oireachtas; Michael Moynihan (TD), Dáil Éireann, the Oireachtas; Michael Healy-Rae (TD), Dáil Éireann, the Oireachtas; Michael Murphy (TD), Dáil Éireann, the Oireachtas; Micheál Carrigy (TD), Dáil Éireann, the Oireachtas; Micheál Martin (Taoiseach), Dáil Éireann, the Oireachtas; Naoise Ó Muirí (TD), Dáil Éireann, the Oireachtas; Naoise O'Cearúil (TD), Dáil Éireann, the Oireachtas; Natasha Newsome Drennan (TD), Dáil Éireann, the Oireachtas; Neale Richmond (TD), Dáil Éireann, the Oireachtas; Niall Collins (TD), Dáil Éireann, the Oireachtas; Niamh Smyth (TD), Dáil Éireann, the Oireachtas; Noel Grealish (TD), Dáil Éireann, the Oireachtas; Noel McCarthy (TD), Dáil Éireann, the Oireachtas; Norma Foley (TD), Dáil Éireann, the Oireachtas; Pa Daly (TD), Dáil Éireann, the Oireachtas; Padráig Mac Lochlainn (TD), Dáil Éireann, the Oireachtas; Pádraig Rice (TD), Dáil Éireann, the Oireachtas; Paschal Donohoe (TD), Dáil Éireann, the Oireachtas; Pat Buckley (TD), Dáil Éireann, the Oireachtas; Pat the Cope Gallagher (TD), Dáil Éireann, the Oireachtas; Patrick O'Donovan (TD), Dáil Éireann, the Oireachtas; Paul Donnelly (TD), Dáil Éireann, the Oireachtas; Paul Nicholas Gogarty (TD), Dáil Éireann, the Oireachtas; Paul Lawless (TD), Dáil Éireann, the Oireachtas; Paul McAuliffe (TD), Dáil Éireann, the Oireachtas; Paul Murphy (TD), Dáil Éireann, the Oireachtas; Paula Butterly (TD), Dáil Éireann, the Oireachtas; Peadar Tóibín (TD), Dáil Éireann, the Oireachtas; Pearse Doherty (TD), Dáil Éireann, the Oireachtas; Peter 'Chap' Cleere (TD), Dáil Éireann, the Oireachtas; Peter Burke (TD), Dáil Éireann, the Oireachtas; Peter Roche (TD), Dáil Éireann, the Oireachtas; Réada Cronin (TD), Dáil Éireann, the Oireachtas; Richard Boyd Barrett (TD), Dáil Éireann, the Oireachtas; Richard O'Donoghue (TD), Dáil Éireann, the Oireachtas; Robert O'Donoghue (TD), Dáil Éireann, the Oireachtas; Robert Troy (TD), Dáil Éireann, the Oireachtas; Roderic O'Gorman (TD), Dáil Éireann, the Oireachtas; Rose Conway-Walsh (TD), Dáil Éireann, the Oireachtas; Ruairí Ó Murchú (TD), Dáil Éireann, the Oireachtas; Ruth Coppinger (TD), Dáil Éireann, the Oireachtas; Ryan O'Meara (TD), Dáil Éireann, the Oireachtas; Séamus Healy (TD), Dáil Éireann, the Oireachtas; Seamus McGrath (TD), Dáil Éireann, the Oireachtas; Seán Canney (TD), Dáil Éireann, the Oireachtas; Seán Crowe (TD), Dáil Éireann, the Oireachtas; Seán Fleming (TD), Dáil Éireann, the Oireachtas; Shónagh Ní Raghallaigh (TD), Dáil Éireann, the Oireachtas; Simon Harris (TD), Dáil Éireann, the Oireachtas; Shane Moynihan (TD), Dáil Éireann, the Oireachtas; Shay Brennan (TD), Dáil Éireann, the Oireachtas; Sinéad Gibney (TD), Dáil Éireann, the Oireachtas; Sorca Clarke (TD), Dáil Éireann, the Oireachtas; Thomas Byrne (TD), Dáil Éireann, the Oireachtas; Thomas Byrne (TD), Dáil Éireann, the Oireachtas; Thomas Gould (TD), Dáil Éireann, the Oireachtas; Timmy Dooley (TD), Dáil Éireann, the Oireachtas; Tom Brabazon (TD), Dáil Éireann, the Oireachtas; Tony McCormack (TD), Dáil Éireann, the Oireachtas; Verona Murphy (TD), Dáil Éireann, the Oireachtas; William Aird (TD), Dáil Éireann, the Oireachtas; Willie O'Dea (TD), Dáil Éireann, the Oireachtas; Aidan Davitt (Senator), Seanad; Alice-Mary Higgins (Senator), Seanad; Anne Rabbitte (Senator), Seanad; Alison Comyn (Senator), Seanad; Aubrey McCarthy (Senator), Seanad; Cathal Byrne (Senator), Seanad; Chris Andrews (Senator), Seanad; Conor Murphy (Senator), Seanad; Dee Ryan (Senator), Seanad; Diarmuid Wilson (Senator), Seanad; Eileen Flynn (Senator), Seanad; Eileen Lynch (Senator), Seanad; Evanne Ní Chuilinn (Senator), Seanad; Fiona O'Loughlin (Senator), Seanad; Frances Black (Senator), Seanad; Gareth Scahill (Senator), Seanad; Garret Ahearn (Senator), Seanad; Garret Kelleher (Senator), Seanad; Gerard Craughwell (Senator), Seanad; Imelda Goldsboro (Senator), Seanad; Joanne Collins (Senator), Seanad; Joe Conway (Senator), Seanad; Joe Flaherty (Senator), Seanad; Joe O'Reilly (Senator), Seanad; Laura Harmon (Senator), Seanad; Linda Nelson Murray (Senator), Seanad; Lorraine Clifford-Lee (Senator), Seanad; Lynn Ruane (Senator), Seanad; Malcolm Noonan (Senator), Seanad; Manus Boyle (Senator), Seanad; Margaret Murphy O'Mahony (Senator), Seanad; Maria Byrne (Senator), Seanad; Maria McCormack (Senator), Seanad; Mark Daly (Senator), Seanad; Mark Duffy (Senator), Seanad; Martin Conway (Senator), Seanad; Mary Fitzpatrick (Senator), Seanad; Michael McDowell (Senator), Seanad; Mike Kennelly (Senator), Seanad; Nessa Cosgrove (Senator), Seanad; Niall Blaney (Senator), Seanad; Nicole Ryan (Senator), Seanad; Nikki Bradley (Senator), Seanad; Noel O'Donovan (Senator), Seanad; Ollie Crowe (Senator), Seanad; Paraic Brady (Senator), Seanad; Pat Casey (Senator), Seanad; Patricia Stephenson (Senator), Seanad; Paul Daly (Senator), Seanad; Pauline Tully (Senator), Seanad; Rónán Mullen (Senator), Seanad; Robbie Gallagher (Senator), Seanad; Sarah O'Reilly (Senator), Seanad; Seán Kyne (Senator), Seanad; Shane Curley (Senator), Seanad; Sharon Keogan (Senator), Seanad; Teresa Costello (Senator), Seanad; Tom Clonan (Senator), Seanad; Victor Boyhan (Senator), Seanad

Intent: Understanding of the rare disease landscape and the priorities of people living with rare diseases.

Methods: MeetingEmail

Politician(s) lobbied: John Lahart (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Micheál Martin (Tánaiste and Minister), Department of Foreign Affairs; Simon Harris (An Taoiseach), Department of the Taoiseach; James Lawless (Minister of State), Department of Transport; Mary Butler (Minister of State), Department of Health; Jack Chambers (Minister), Department of Finance; Paschal Donohoe (Minister), Department of Public Expenditure, NDP Delivery and Reform; Paschal Donohoe (Minister), Department of Public Expenditure, NDP Delivery and Reform; Jennifer Carroll MacNeill (Minister of State), Department of the Taoiseach; Helen McEntee (Minister), Department of Justice; Helen McEntee (Minister), Department of Justice

Intent: Inclusion of rare diseases in Programme for Government - specifically Implementation of new National RD Strategy; Provide timely equitable access to medical innovations, including orphan medicines, advanced therapies, genomics and devices; and Deliver a comprehensive robust and integrated newborn screening system for all.

Methods: Email