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also here to speak about Friedreich's ataxia. On Monday evening, I met Aoife Quinn from County Galway, who was diagnosed with Friedreich’s ataxia in 2021. She outlined to me her long pathway to getting a diagnosis for this rare disease and how the disease impacted … independence for as long as possible. She is just one of approximately 200 people across the State who are living with Friedreich's ataxia. Access to this treatment would also help those who are newly diagnosed, who may be spared some of the suffering experienced by those before

Deputy's question. Omaveloxolone, sold under the brand name Skyclarys, is a medication licensed by the European Medicines Agency to treat Friedreich’s ataxia in patients aged 16 years and over. Friedreich’s ataxia is a rare inherited disease that causes damage to the nervous system. Under

know a lot of people, as has Deputy Aird, over the past few months like Emily Felix, who suffers from Friedreich's ataxia, and Craig Coady, the parent of two boys who also have that terrible and debilitating disease, one of whom passed away, unfortunately

dedicated to new drugs, specifically drugs for rare diseases. When I submitted this question, I specifically wanted to talk about Friedreich's ataxia and the drug Skyclarys, which is currently under consideration by the National Centre for Pharmacoeconomics, NCPE, and the drugs group. It is a degenerative disease

parties involved should be delivering this vital medication to the people who need it. Aoife and all of those who suffer from Friedreich’s ataxia want an opportunity to have as good a quality of life as possible. This medication is critical for them. As we speak, people

long-term hospitalisation. She has Huntington's disease. They buried their 13-year-old son Rory, who died as a result of Friedreich's ataxia. Their second son Paudie, who is 15 years old, is dying of the same disease. Skyclarys is not a perfect medicine

constituency a family have already buried one child due to Friedreich's ataxia and their second child is now in a wheelchair due to the same disease, which is advancing. A treatment called SkyClarys is clinically approved and has been shown to slow the progress and the State

review of the reimbursement process, which numerous Deputies have raised here over the past few months. We have had people with Friedreich's ataxia and different types of muscular atrophy and dystrophy. The list goes on. Dr. Rónán Collins was before the health committee and I asked

thank the Deputy for raising this again. I was very pleased to have the opportunity to meet many of the people with Friedreich's ataxia whom he brought to the Dáil. I want to highlight to Deputies that, importantly, our drugs budget has increased significantly this year, being

will intervene to ensure that the Health Service Executive urgently prioritises the conclusion of reimbursement negotiations for skyclarys for the treatment of Friedreich’s ataxia, given that it is currently the only available treatment for this progressive and life-limiting rare disease and that Friedreich’s ataxia

Health the measures being taken to improve the timeliness of access to orphan drugs in Ireland, particularly in cases such as Friedreich's ataxia, where a treatment has been approved by the EMA but is not yet reimbursed by the HSE; and if she will make a statement

Daly asked the Minister for Health her views on whether the ongoing delay in concluding reimbursement negotiations for skyclarys for patients with Friedreich’s ataxia is consistent with the commitment to “equitable access” set out in the recently launched National Rare Disease Strategy

Eoghan Kenny asked the Minister for Health if her Department has considered the inclusion of skyclarys (omaveloxolone) which is a treatment for Friedreich's ataxia in a reimbursement scheme given the cost of the drug and the fact that other European countries provide this scheme to patients

details supplied); if she will provide an update on the HSE's decision regarding the reimbursement of skyclarys for the treatment of Friedreich's ataxia; if she will note that 619 days have elapsed since the application for reimbursement was submitted by the pharmaceutical company; the timeline

asked the Minister for Health whether an application has been received for the reimbursement of the drug skyclarys for the treatment of Friedreich’s ataxia; if so, the current status of that application; the date on which it was submitted to the National Centre for Pharmacoeconomics

decisions for orphan or rare disease medicines over the past five years; the specific timelines applicable in the case of treatments for Friedreich’s ataxia; and whether any delays have arisen in the assessment process for this category of medicines. [29079/26

Health whether any interim access schemes, compassionate use programmes, or early access pathways are currently available in the State for patients with Friedreich’s ataxia; and whether consideration is being given to enabling access to skyclarys pending a full reimbursement decision. [29080/26

Deputy Ken O'Flynn asked the Minister for Health the estimated number of patients diagnosed with Friedreich’s ataxia in the State; the number currently under active neurological care; and whether a national clinical pathway or specialised service model exists for this condition. [29082/26

Deputy James Geoghegan asked the Minister for Health if the drug skyclarys (omaveloxolone) used for the treatment of Friedreich's ataxia will be made available under licence in Ireland; and if she will make a statement on the matter. [28209/26

Deputy Emer Currie asked the Minister for Health the latest update on the accessibility of skyclarys for the treatment of Friedreich’s ataxia; the timeline as to when the HSE senior leadership team will make a decision; and if she will make a statement on the matter. [27367/26

asked the Minister for Health if consideration will be given to adding the drug skyclarys which is used in the treatment of Friedreich's ataxia to the drugs payment scheme; and if she will make a statement on the matter. [25182/26

Minister for Health the steps that can be taken to bring Ireland in line with other European countries for the treatment of Friedreich’s ataxia (details supplied); and if she will make a statement on the matter. [25231/26

Deputy Tom Brabazon asked the Minister for Health if the HSE will fund the skyclarys drug for those suffering from Friedreich's ataxia. [26084/26

treatment Omaveloxolone sold under the brand name Skyclarys will be reviewed given it is the only pharmaceutical treatment available for treating Friedreich's Ataxia; and if she will make a statement on the matter. [26180/26

ensure that the HSE urgently prioritizes a conclusion to the skyclarys 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. [26466/26

intervene to ensure that the HSE urgently concludes reimbursement negotiations for skyclarys given that it is currently the only available treatment for Friedreich’s ataxia and that the condition may be considered an unmet need under the National Rare Disease Strategy 2025–2030; and if she will make