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Lobbying Records (Page 1 of 1)
2022-05-13
Politician(s) lobbied: Colm Burke (TD), Dáil Éireann, the Oireachtas
Intent: Raise awareness of Rare Lymphomas such as Cutaneous T-Cell Lymphoma.::Raise awareness of the importance of patient involvement in the reimbursement process to ensure the patient voice is represented::Raise awareness of the need for progress in the use of rare disease data registries as called for in the National Rare Disease Plan for Ireland 2014-2018
Methods: Virtual Meeting
Details & Methods:
| Method | Description |
|---|---|
| — | Raise awareness of Cutaneous T-cell Lymphoma (CTCL) |
| — | the experience of patients and the ultra-rare nature of the condition including the high unmet need. Highlighted the challenges associated with bringing treatments to patients with very rare conditions in Ireland and the importance of recent developments with respect to improving access for patients |
| — | and the need for these to deliver improvements to patients in Ireland. |
2022-01-14
Politician(s) lobbied: Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Róisín Shorthall (TD), Dáil Éireann, the Oireachtas
Intent: Raise awareness of rare Lymphomas such as Cutaneous T-Cell Lymphoma::Highlight the importance of patient involvement in the health technology appraisal process::Raise awareness of the challenges relating to health technology appraisal for ultra rare conditions.
Methods: Email
Details & Methods:
| Method | Description |
|---|---|
| — | Introduction to Kyowa Kirin International; Awareness raising of Lymphoma Awareness Month; Highlighting concerns around progress of Sláintecare |