Politician(s) lobbied: Anne O'Connor (Chief Executive Officer), Health Service Executive; Colm Henry (Chief Clinical Officer), Health Service Executive; Pat Healy (National Director for Service and Schemes), Health Service Executive; Grace Rothwell (National Director for Access and Integration), Health Service Executive; Mark Brennock (National Director for Communications and Public Affairs), Health Service Executive; Damien Mccallion (Chief Technology and Transformation Officer), Health Service Executive; Stephen Mulvany (Chief Financial Officer), Health Service Executive; Anne Marie Hoey (Chief People Officer), Health Service Executive; Martina Queally (Regional Executive Officer), Health Service Executive; Tony Canavan (Regional Executive Officer), Health Service Executive; Andy Phillips (Regional Executive Officer), Health Service Executive; Sandra Broderick (Regional Executive Officer), Health Service Executive; Kate Killeen White (Regional Executive Officer), Health Service Executive; Sara Long (Regional Executive Officer), Health Service Executive
Intent: Reimbursement of Friedriech's ataxia drug Skyclarys
Methods: Letter
Details by Method
Letter
Letter to HSE Leadership seeking reimbursement of Skyclarys
Politician(s) lobbied: Pádraig Rice (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Sorca Clarke (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Martin Daly (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Peter Roche (TD), Dáil Éireann, the Oireachtas; Marie Sherlock (TD), Dáil Éireann, the Oireachtas; Manus Boyle (Senator), Seanad; Maria Byrne (Senator), Seanad; Tom Clonan (Senator), Seanad; Nicole Ryan (Senator), Seanad; Anne Rabbitte (Senator), Seanad; John Lahart (TD), Dáil Éireann, the Oireachtas; Muiris O’Connor (Assistant Secretary), Department of Health; Professor Mary Horgan (Chief Medical Officer), Department of Health; Jennifer Carroll MacNeill (Minister), Department of Health; Colm Henry (Chief Clinical Officer), Health Service Executive; Anne O'Connor (Chief Executive Officer), Health Service Executive; Pat Healy (National Director for Service and Schemes), Health Service Executive
Intent: Attendance at upcoming Associated EU Presidency on Rare Diseases on Nov 13
Methods: Email
Details by Method
Email
Email to some TDs, Senators & HSE leadership asking them to Save the Date for the RDI Associated EU Presidency Event on Nov 13
Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health
Intent: Increase the scope of HIQA review of screening programs to take in wider screening programs, in particular screening in pregnancy.
Methods: Email
Details by Method
Email
Email to Health Minister raising concern about the scope of the HIQA review of papulation based health screening services, particularly with reference to screening in pregnancy.
Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health
Intent: Attendance in person by Minister or DoH delegate at Prague meeting.
Methods: Email
Details by Method
Email
Email requesting attendance by Minister of delegate at meeting on rare diseases in Prague on 3 June 2026.
Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Malcolm Byrne (TD), Dáil Éireann, the Oireachtas; Martin Daly (TD), Dáil Éireann, the Oireachtas; Pat the Cope Gallagher (TD), Dáil Éireann, the Oireachtas; Seamus McGrath (TD), Dáil Éireann, the Oireachtas; Aisling Dempsey (TD), Dáil Éireann, the Oireachtas; Brendan Smith (TD), Dáil Éireann, the Oireachtas; Michael Collins (TD), Dáil Éireann, the Oireachtas; Shane Moynihan (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Anne Rabbitte (Senator), Seanad; Teresa Costello (Senator), Seanad; Maria Byrne (Senator), Seanad; Marie Sherlock (TD), Dáil Éireann, the Oireachtas; John Clendennen (TD), Dáil Éireann, the Oireachtas; Rose Conway-Walsh (TD), Dáil Éireann, the Oireachtas; Alan Dillon (Minister of State), Department of Enterprise, Trade and Employment; Pádraig Rice (TD), Dáil Éireann, the Oireachtas; Michael Cahill (TD), Dáil Éireann, the Oireachtas; Seán Ó Fearghaíl (TD), Dáil Éireann, the Oireachtas
Intent: Initiate development of an early access scheme for orphan medicines
Methods: EmailLetterMeeting
Details by Method
Email
Follow up email sharing presentation and handout from APG meeting with TDs & Senators requesting further information.
Email
Follow up email thanking TDs and Senators for support and noting dispatch of letter to Minister on the topic of access to medicines.
Letter
Letter sent to Health Minister seeking meeting to discuss development of an early access scheme for rare diseases.
Meeting
Presentation at cross Party Group on Rare Diseases meeting attended by TDs & Senators, healthcare professionals and patient advocates and people living with rare diseases to highlight the challenges accessing orphan medicines and the need for an early access scheme.
Politician(s) lobbied: Jennifer Carroll MacNeill (Minister), Department of Health
Intent: Minister to agree to speak at associated EU Presidency event on Nov 13
Methods: Letter
Details by Method
Letter
Letter sent to Minister asking her to deliver keynote address at the associated EU Presidency event 'Embedding Research and Innovation as Standard of Care in Rare Diseases' on Nov 13 in Dublin
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
Details by Method
Email
Emails seeking support for hosting a rare disease event during Ireland's EU Presidency, including clarification on submission process through Dept of Helath for government's call for 'Presidency Associated Events'
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
Details by Method
Email
Email sent to Minister in advance of EU4Health Steering Committee meeting of Feb 24th seeking support for reinstatement of EU operating grants.
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
Details by Method
Email
Follow up email to Minister for Health and colleagues to highlight the benefits of hosting a rare disease conference as an official event during Ireland's term as EU Presidency
Informal communication
Side conversations (at launch of NCTOG report) seeking to impress on influencers and decision makers the importance of including rare disease innovation in the EU Presidency agenda, not just from a health perspective but also as a platform to showcase the benefit of investment in innovation and support for industry in Ireland and across Europe.
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
Details by Method
Email
Emails seeking update and information on establishment of the Implementation Oversight Group to monitor implementation of the National Rare Disease Strategy and role for patients & advocates in this group.
