DEBRA Ireland

Politician(s) lobbied: Bernard Gloster (Chief Executive Officer), Health Service Executive

Intent: To secure funding for Debra Family Support Services

Methods: Email

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

Intent: For Ireland to host a rare diseases conference

Methods: Email

Politician(s) lobbied: Pádraig Rice (TD), Dáil Éireann, the Oireachtas

Intent: To ensure that the Committee focuses on the areas outlined and to secure participation in a committee hearing.

Methods: Email

Politician(s) lobbied: Unknown

Intent: Unknown

Methods: Unknown

Politician(s) lobbied: John Lahart (TD), Dáil Éireann, the Oireachtas; Róisín Shorthall (TD), Dáil Éireann, the Oireachtas; Lorraine Clifford-Lee (Senator), Seanad; Martin Conway (Senator), Seanad; Annie Hoey (Senator), Seanad; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Colm Burke (Minister of State), Department of Health; Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Duncan Smith (TD), Dáil Éireann, the Oireachtas; Pauline Tully (TD), Dáil Éireann, the Oireachtas; Seán Kyne (Senator), Seanad

Intent: Debra wished to thank the parties for their support in 2024 that led to the government support of the 2025 Pre Budget Submission for people living with EB in Ireland and implementation of a plan to fund the initiatives through the HSE from 2025. DEBRA intended to keep parties updated and secure continued support to ensure the initiatives from Debra's 2025 PreBudget Submission are implemented.

Methods: Email

Politician(s) lobbied: Seán Crowe (TD), Dáil Éireann, the Oireachtas; Bernard Durkan (TD), Dáil Éireann, the Oireachtas; Colm Brophy (TD), Dáil Éireann, the Oireachtas; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Róisín Shorthall (TD), Dáil Éireann, the Oireachtas; Lorraine Clifford-Lee (Senator), Seanad; Martin Conway (Senator), Seanad; Annie Hoey (Senator), Seanad; Seán Kyne (Senator), Seanad; Frances Black (Senator), Seanad; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Jack Chambers (Minister), Department of Finance; Colm Burke (Minister of State), Department of Health; Stephen Donnelly (Minister), Department of Health; Paschal Donohoe (Minister), Department of Public Expenditure, NDP Delivery and Reform; Hildegarde Naughton (Minister of State), Department of Health; Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Duncan Smith (TD), Dáil Éireann, the Oireachtas; Pauline Tully (TD), Dáil Éireann, the Oireachtas

Intent: To raise awareness of challenges faced by people with EB when accessing services and supports in acute and community settings, and to ask for consideration for ringfenced funding for these services in budget 2025.

Methods: Email

Politician(s) lobbied: Bernard Durkan (TD), Dáil Éireann, the Oireachtas

Intent: Securing ringfenced funding for the provision of nursing support and care packages for people with EB.

Methods: Email

Politician(s) lobbied: Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas

Intent: Clarity on service provisions and awareness of challenges facing people with EB

Methods: Email

Politician(s) lobbied: Seán Crowe (TD), Dáil Éireann, the Oireachtas; Bernard Durkan (TD), Dáil Éireann, the Oireachtas; Colm Brophy (TD), Dáil Éireann, the Oireachtas; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Róisín Shorthall (TD), Dáil Éireann, the Oireachtas; Frances Black (Senator), Seanad; Lorraine Clifford-Lee (Senator), Seanad; Martin Conway (Senator), Seanad; Annie Hoey (Senator), Seanad; Regina Doherty (Senator), Seanad; Regina Doherty (MEP), European Parliament; Barry Andrews (MEP), European Parliament; Daithí Doolan (Councillor), Dublin City Council; Lynn Boylan (MEP), European Parliament; Ciarán Cuffe (MEP), European Parliament; Aodhán Ó Ríordáin (MEP), European Parliament; Bríd Smith (TD), Dáil Éireann, the Oireachtas; Clare Daly (MEP), European Parliament; Maria Walsh (MEP), European Parliament; Niall Blaney (Senator), Seanad; Lisa Chambers (Senator), Seanad; Barry Cowen (TD), Dáil Éireann, the Oireachtas; Chris MacManus (MEP), European Parliament; Pauline O'Reilly (Senator), Seanad; Peadar Tóibín (TD), Dáil Éireann, the Oireachtas; Seán Kelly (MEP), European Parliament; Billy Kelleher (MEP), European Parliament; Cynthia Ní Mhurchú (MEP), European Parliament; Kathleen Funchion (MEP), European Parliament; Paul Gavan (Senator), Seanad; Grace O'Sullivan (MEP), European Parliament; Danny Healy-Rae (TD), Dáil Éireann, the Oireachtas; Michael Healy-Rae (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Seán Kyne (Senator), Seanad; John Sheahan (Councillor), Limerick City and County Council; Tom Ruddle (Councillor), Limerick City and County Council; Liam Galvin (Councillor), Limerick City and County Council; Francis Foley (Councillor), Limerick City and County Council; Michael Collins (Councillor), Limerick City and County Council; Abul Kalam Azad Talukder (Councillor), Limerick City and County Council; Elisa O'Donovan (Councillor), Limerick City and County Council; Dan McSweeney (Councillor), Limerick City and County Council; Joe Leddin (Councillor), Limerick City and County Council; Fergus Kilcoyne (Councillor), Limerick City and County Council; Barry Walsh (Councillor), Laois County Council; Marie Tuohy (Councillor), Laois County Council; Caroline Dwane Stanley (Councillor), Laois County Council; William Aird (Councillor), Laois County Council; Robert Power (Councillor), Kildare County Council; Chris Pender (Councillor), Kildare County Council; Tracey O'Dwyer (Councillor), Kildare County Council; Peggy O'Dwyer (Councillor), Kildare County Council; Noel Heavey (Councillor), Kildare County Council; Mikey Sheehy (Councillor), Kerry County Council; Anne O'Sullivan (Councillor), Kerry County Council; Terry O'Brien (Councillor), Kerry County Council; Sam Locke (Councillor), Kerry County Council; Deirdre Ferris (Councillor), Kerry County Council; Angie Baily (Councillor), Kerry County Council; Peter Keane (Councillor), Galway City Council; Clodagh Higgins (Councillor), Galway City Council; Alan Curran (Councillor), Galway City Council; John Connolly (Councillor), Galway City Council; Ollie Turner (Councillor), Galway County Council; Andrew Reddington (Councillor), Galway County Council; Karey McHugh Farag (Councillor), Galway County Council; Donagh Mark Killilea (Councillor), Galway County Council; Pa Daly (TD), Dáil Éireann, the Oireachtas; Mary Hoade (Councillor), Galway County Council; Noel Thomas (Councillor), Galway County Council; Pádraig Mac an Iomaire (Councillor), Galway County Council; Cillian Keane (Councillor), Galway County Council; Albert Dolan (Councillor), Galway County Council; David Collins (Councillor), Galway County Council; James Charity (Councillor), Galway County Council; Helen Uchechukwu Ogbu (Councillor), Galway City Council; Terry O'Flaherty (Councillor), Galway City Council; Declan McDonnell (Councillor), Galway City Council; Shane Forde (Councillor), Galway City Council; Alan Cheevers (Councillor), Galway City Council; Justin Moylan (Councillor), Dun Laoghaire-Rathdown County Council; Tom Kivlehan (Councillor), Dun Laoghaire-Rathdown County Council; Thomas Joseph (Councillor), Dun Laoghaire-Rathdown County Council; Melisa Halpin (Councillor), Dun Laoghaire-Rathdown County Council; Lorraine Hall (Councillor), Dun Laoghaire-Rathdown County Council; Mary Fayne (Councillor), Dun Laoghaire-Rathdown County Council; JP Durkan (Councillor), Dun Laoghaire-Rathdown County Council; Joanna Tuffy (Councillor), South Dublin County Council; Liona O'Toole (Councillor), South Dublin County Council; Paul Gogarty (Councillor), South Dublin County Council; Vicki Casserly (Councillor), South Dublin County Council; Caroline Brady (Councillor), South Dublin County Council; Carrie Smyth (Councillor), Dun Laoghaire-Rathdown County Council; Frank McNamara (Councillor), Dun Laoghaire-Rathdown County Council; Hugh Lewis (Councillor), Dun Laoghaire-Rathdown County Council; Jim Gildea (Councillor), Dun Laoghaire-Rathdown County Council; Jacqueline Burke (Councillor), Dun Laoghaire-Rathdown County Council; Darragh Butler (Councillor), Fingal County Council; James Humphreys (Councillor), Fingal County Council; Luke Corkery (Councillor), Fingal County Council; Joe Newman (Councillor), Fingal County Council; Dean Mulligan (Councillor), Fingal County Council; Malachy Quinn (Councillor), Fingal County Council; Gráinne Maguire (Councillor), Fingal County Council; Tom Murphy (Councillor), Dun Laoghaire-Rathdown County Council; Brendan Ryan (Councillor), Fingal County Council; Tom O'Leary (Councillor), Fingal County Council; Cathal Boland (Councillor), Fingal County Council; Corina Johnston (Councillor), Fingal County Council; Robert O'Donoghue (Councillor), Fingal County Council; Eoghan Dockrell (Councillor), Fingal County Council; Liam Quaide (Councillor), Cork County Council; Patrick Mulcahy (Councillor), Cork County Council; Michael Hegarty (Councillor), Cork County Council; Ann Marie Ahern (Councillor), Cork County Council; Pádraig Rice (Councillor), Cork City Council; Shane O'Callaghan (Councillor), Cork City Council; Sean Martin (Councillor), Cork City Council; Fiona Kerins (Councillor), Cork City Council; Paudie Dineen (Councillor), Cork City Council; Dan Boyle (Councillor), Cork City Council; John Paul O'Shea (Councillor), Cork County Council; Ian Doyle (Councillor), Cork County Council; Patrick Gerard Murphy (Councillor), Cork County Council; Finbarr Harrington (Councillor), Cork County Council; Caroline Cronin (Councillor), Cork County Council; Danny Collins (Councillor), Cork County Council; Trevor Smith (Councillor), Cavan County Council; TP O'Reilly (Councillor), Cavan County Council; Shane P O'Reilly (Councillor), Cavan County Council; Philip Brady (Councillor), Cavan County Council; Winston J. Bennett (Councillor), Cavan County Council; Val Smith (Councillor), Cavan County Council; Niall Smith (Councillor), Cavan County Council; Sarah O'Reilly (Councillor), Cavan County Council; Carmel Brady (Councillor), Cavan County Council; Ken Murnane (Councillor), Carlow County Council; Paul Doogue (Councillor), Carlow County Council; Andrea Dalton (Councillor), Carlow County Council; John Cassin (Councillor), Carlow County Council; Fergal Browne (Councillor), Carlow County Council; Martha Fanning (Councillor), Dun Laoghaire-Rathdown County Council; Conor Dowling (Councillor), Dun Laoghaire-Rathdown County Council; Maurice Dockrell (Councillor), Dun Laoghaire-Rathdown County Council; Michael Clark (Councillor), Dun Laoghaire-Rathdown County Council; Dan Carson (Councillor), Dun Laoghaire-Rathdown County Council; Marie Baker (Councillor), Dun Laoghaire-Rathdown County Council; Patrick Gerard Murphy (Councillor), Cork County Council; Daithí Doolan (Councillor), Dublin City Council; Duncan Smith (TD), Dáil Éireann, the Oireachtas

Intent: Consideration of the rights and needs of people with EB in new plans, policies and actions taken by newly elected representatives.

Methods: Email

Politician(s) lobbied: Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas

Intent: Awareness of challenges facing people with EB

Methods: Email