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Lobbying Records (Page 1 of 2)
2025-01-15
Politician(s) lobbied: Unknown
Intent: To highlight the complex nature of Huntington’s disease (HD) and the persistent impact it has on families over generations in order to gain political support for a national HD specialist mutli-disciplinary service with coordinated care , outreach and a dedicated care pathway.
Methods: Unknown
Details & Methods:
| Method | Description |
|---|---|
| — | To highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathway for families impacted by Huntington's disease. |
2024-09-20
Politician(s) lobbied: Anne Rabbitte (Minister), Department of Children, Equality, Disability, Integration and Youth
Intent: To secure an Advanced Nurse Practitioner post for Huntington’s Disease at University Hospital Galway
Methods: Email
Details & Methods:
| Method | Description |
|---|---|
| — | To advocate for the recruitment of an Advanced Nurse Practitioner candidate for Huntington’s Disease at University Hospital Galway. |
2024-01-12
Politician(s) lobbied: Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth
Intent: To secure support for the development of a coordinated specialist service for families affected by Huntington's Disease by continuing to highlight the complexity of this disease, the generational impact, the lack of appropriate coordinated services and the barriers preventing access to existing health and social care services
Methods: Meeting
Details & Methods:
| Method | Description |
|---|---|
| — | To advocate for a coordinated specialist service for families affected by Huntington’s Disease. Specifically to seek support for a Huntington's Disease out-reach demonstrator project. |
2023-09-04
Politician(s) lobbied: Mary Butler (Minister of State), Department of Health; Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; John Lahart (TD), Dáil Éireann, the Oireachtas; James Lawless (TD), Dáil Éireann, the Oireachtas; Michael Moynihan (TD), Dáil Éireann, the Oireachtas; Jim O'Callaghan (TD), Dáil Éireann, the Oireachtas; Darragh O'Brien (Minister), Department of Housing, Local Government and Heritage; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; Seán Ó Fearghaíl (TD), Dáil Éireann, the Oireachtas; Brendan Smith (TD), Dáil Éireann, the Oireachtas; Thomas Byrne (TD), Dáil Éireann, the Oireachtas; Jackie Cahill (TD), Dáil Éireann, the Oireachtas
Intent: To secure support for the development of a coordinated specialist service for families affected by Huntington's Disease by continuing to highlight the complexity of this disease, the generational impact, the lack of appropriate coordinated services and the barriers preventing access to existing health services
Methods: Letter, Email
Details & Methods:
| Method | Description |
|---|---|
| — | To advocate for a coordinated specialist service for families affected by Huntington’s Disease. Specifically to seek support for a Huntington's Disease out-reach demonstrator project. |
2023-05-15
Politician(s) lobbied: Mary Butler (Minister of State), Department of Health; Corona Joyce (Special Adviser), Department of Health
Intent: To secure support for the development of a coordinated specialist service for families affected by Huntington's Disease by highlighting the complexity of this disease, the generational impact, the lack of appropriate coordinated services and the barriers preventing access to existing health services
Methods: Meeting
Details & Methods:
| Method | Description |
|---|---|
| — | To advocate for a coordinated specialist service for families affected by Huntington’s Disease. |
2023-01-09
Politician(s) lobbied: Anne Rabitte (Minister of State), Department of Health; Anne Rabitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Mary Butler (Minister of State), Department of Health
Intent: To secure a meeting with Ministers of State at the Department of Health to discuss issues affecting people with Huntington's Disease and their families including the generational impact, the lack of appropriate coordinated services, barriers preventing access to existing health services and to advocate for an essential coordinated specialist service for families impacted by Huntington's disease.
Methods: Meeting, Email
Details & Methods:
| Method | Description |
|---|---|
| — | To advocate for a coordinated specialist service for families affected by Huntington’s Disease. |
2022-08-31
Politician(s) lobbied: Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Mary Butler (Minister of State), Department of Health; John Lahart (TD), Dáil Éireann, the Oireachtas
Intent: To highlight the complex nature of Huntington’s disease (HD) and the persistent impact it has on families over generations in order to gain political support for a national HD specialist mutli-disciplinary service with coordinated care and outreach and dedicated care pathways.
Methods: Meeting, Letter
Details & Methods:
| Method | Description |
|---|---|
| — | To highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathways for families impacted by Huntington's disease. |
2022-05-21
Politician(s) lobbied: Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Mary Butler (Minister of State), Department of Health; John Lahart (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Niamh Smyth (TD), Dáil Éireann, the Oireachtas
Intent: To highlight the complex nature of Huntington’s disease (HD) and the persistent impact it has on families over generations in order to gain political support for a national HD specialist mutli-disciplinary service with coordinated care and outreach and dedicated care pathways.
Methods: Virtual Meeting, Event / Reception
Details & Methods:
| Method | Description |
|---|---|
| — | To highlight the need for a coordinated specialist multi-disciplinary service and dedicated integrated care pathways for families impacted by Huntington's disease. |
2022-01-17
Politician(s) lobbied: Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Mary Butler (Minister of State), Department of Health; John Lahart (TD), Dáil Éireann, the Oireachtas
Intent: To secure a meeting with Ministers to discuss issues affecting people with Huntington's including the lack of specialist coordinated services, barriers to access general health services and to highlight the essential need for a coordinated specialist service for families impacted by Huntington's disease
Methods: Email
Details & Methods:
| Method | Description |
|---|---|
| — | To request a joint meeting with Minister Butler |
| — | Minister Rabbitte and clinicians working with Huntington's disease to highlight the need for a coordinated specialist service and to propose a development plan for Huntington's disease. |
2021-09-13
Politician(s) lobbied: Mary Butler (Minister of State), Department of Health; Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Stephen Donnelly (Minister), Department of Health; Colm Burke (TD), Dáil Éireann, the Oireachtas; Róisín Shorthall (TD), Dáil Éireann, the Oireachtas; Cathal Crowe (TD), Dáil Éireann, the Oireachtas; Seán Crowe (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Bernard Durkan (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Frances Black (Senator), Seanad; David Norris (Senator), Seanad; Frank Feighan (Minister of State), Department of Health; Ivana Bacik (Senator), Seanad; Hazel Chu (Councillor), Dublin City Council; Annie Hoey (Senator), Seanad; Seán Kyne (Senator), Seanad; Martin Conway (Senator), Seanad; Lorraine Clifford-Lee (Senator), Seanad
Intent: To raise awareness of the impact of Huntington’s disease on individuals and families affected.
Methods: Email
Details & Methods:
| Method | Description |
|---|---|
| — | During Huntington’s Disease Awareness month (May 2021) we requested TDs |
| — | Senators and Councillors with a special interest in health or equality to post their support on social media for the Huntington’s Disease Alliance UK and Ireland #FamilyMatters awareness campaign. |