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have spoken to the Minister for Health about this issue. There is engagement with the company involved in the case of Friedreich’s ataxia. The Department had been awaiting responses, but that engagement is vital to trying to get this resolved for Friedreich's ataxia cases

know that the Taoiseach is familiar with those who suffer from Friedreich's ataxia, as it has been raised with him in recent weeks. It is now nearly 700 days and the HSE has still not made a decision on the reimbursement for the drug Skyclarys. Other

that body of work now. If the Taoiseach had watched the programme, he would have seen Emily Felix and other people with Friedreich’s ataxia. Craig Coady from Cork, whose child suffers from the same condition, has lost a child already and his wife is seriously

Gallagher that the pharmaceutical companies need to come to the table as well. I answered a similar question here last week about Friedreich's Ataxia. It is important now that the negotiations are under way and that we get a positive result

raise with the Minister the case of Oisín Pollard. At nine years of age, Oisín was diagnosed with Friedreich's ataxia. For the past 18 years, he has battled on. For most of those 18 years, he was told there was no treatment. Now, for the first time

Flynn asked the Minister for Health if the HSE maintains a national registry, prevalence estimate or centrally collated dataset for Friedreich's ataxia patients in the State. [38848/26

Flynn asked the Minister for Health whether the assessment of omaveloxolone (skyclarys) included analysis of indirect societal costs associated with Friedreich's ataxia, including disability supports, caregiver burden, loss of educational participation, workforce impacts and long-term health service utilisation; and if she will provide details

Deputy Ken O'Flynn asked the Minister for Health whether the HSE Drugs Group considered the progressive and degenerative nature of Friedreich's ataxia, including irreversible disease progression during reimbursement delays, in its consideration of omaveloxolone (Skyclarys); and if she will make a statement on the matter. [39840/26

that the HSE urgently prioritises a conclusion to the skyclarys (omaveloxolone) reimbursement negotiations, given that it is the only available treatment for Friedreich’s ataxia, which currently can be classed as having an ‘unmet need’ as outlined in the National Rare Disease Strategy 2025-2030; her views

Health if she will urgently provide an update on the HSE's decision regarding the reimbursement of skyclarys for the treatment of Friedreich's ataxia; the timeline for a final decision; and if she will make a statement on the matter. [37786/26

exists within the HSE or under her Department’s policy remit for reimbursement applications relating to rare or progressive neurological conditions, including Friedreich’s ataxia; and if she will detail the criteria and governance of any such mechanism. [33751/26

Health whether her Department or the HSE maintains a national register or consolidated dataset of patients diagnosed with rare neurological conditions, including Friedreich’s ataxia; and if not, whether any plans are in place to establish such a dataset for service planning purposes. [33754/26

Minister for Health whether a nationally defined clinical pathway, model of care, or designated specialist service exists for patients diagnosed with Friedreich’s ataxia; and if not, how care is currently coordinated across the State. [33755/26

Disease Strategy 2025–2030; the measures that are being taken to address delays in cases where EMA-approved treatments, including those for Friedreich’s ataxia, remain unavailable to patients in Ireland; and if she will make a statement on the matter. [31882/26

Flynn asked the Minister for Health whether any patients in the State currently have access to omaveloxolone, marketed as Skyclarys, for Friedreich’s ataxia through compassionate use, named patient access, hospital-level approval, exceptional funding, or any other interim access mechanism pending a final HSE reimbursement decision

State known to the HSE or the Department of Health who are clinically eligible for treatment with omaveloxolone, marketed as Skyclarys, for Friedreich’s ataxia; and if this number has informed any budget impact assessment. [32772/26

asked the Minister for Health whether the Department or HSE has examined the favourable reimbursement opinion issued in France for Skyclarys in Friedreich’s ataxia, and whether such international assessments are considered in Irish rare disease reimbursement decisions. [32776/26

asked the Minister for Health whether the Department or HSE is aware that Italy’s medicines authority approved reimbursement of Skyclarys for Friedreich’s ataxia in December 2025, and whether this decision has been considered in the Irish process. [32777/26