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this through initiatives such as the FTD brothers' campaign raising awareness of dementia and through the courageous efforts of families affected by Friedreich's ataxia who have spoken publicly about the urgent need for medical intervention. In my home county, there are a number of families living with … Friedreich's ataxia. I think particularly of Liam and Kiara Lynch and Theresa Kane and her two young children. For those who are unfamiliar with this disease, it is a rare, inherited neurodegenerative disorder that can cause progressive damage to the nervous system and the heart. There

very much a country-by-country experience at the moment. I am conscious, in particular, of those people whose lives are affected Friedreich’s ataxia, a rare genetic neurological condition. I know that many Deputies may raise access to treatment for this condition today, and I want … respond carefully and respectfully. I met many of the families and many of the people suffering from Friedreich's ataxia, privately and in the audiovisual room briefing. I was very glad to have the opportunity to meet those patients, as I have had the opportunity to meet other

timelines - and when these families can expect this medicine. I will raise, as others have, Skyclarys and the treatment of Friedreich's ataxia, a rare neurodegenerative disorder that progresses very quickly, resulting in neurological decline, the loss of bodily function, mobility and independence, and ultimately death. Approximately … people in Ireland have Friedreich's ataxia. I know the Minister met some of them earlier this year. Skyclarys is the only approved treatment for this condition. It was approved by the EMA in February 2024 and is available in many states across

maximum outcomes from interventions. Deputy Heneghan raised the northside home care workers, which I spoke about earlier. I also spoke about Friedreich's ataxia. I will come back to him about the home care workers; I think I have already outlined to Deputy Quaide and other Deputies … situation with Friedreich's ataxia. Deputy Ward raised waiting times for disabilities. Early intervention is key. That is why we are doing the reforms that we are doing. Not everybody likes it, but we believe it is better to do it the way we are proposing

calls for the availability of treatments for Friedreich's ataxia and Duchenne muscular dystrophy and to recognise the very brave patients and their advocates who have made this case in Leinster House. Skyclarys is the first and only approved treatment for Friedreich's ataxia which around 200 people

Friedreich’s ataxia is a progressive and degenerative disease for which there is no cure. Until recently there was no effective treatment either but now there is. It is called Skyclarys and it is available elsewhere in Europe but not here in Ireland. People with Friedreich’s ataxia

want to speak on behalf of families and patients with Friedreich's ataxia and muscular dystrophy. I want to speak particularly for Eric Fitzgerald, a young man from Ballyhaunis, in County Mayo, who is losing power and muscle and whose lower limbs have weakened significantly. His condition … Eric, the passage of time means the loss of muscle. It is extraordinarily sad. I met a group of young people with Friedreich's ataxia last month. I met a wonderful young woman called Emily Felix. Emily's story is again exceptionally sad. Emily has started recording

They rank amongst the hardest stories I have listened to in my seven years up here. Many people will be familiar with Friedreich's ataxia, which I know the Minister obviously cannot speak about today in any great detail. The heartbreaking stories of those families and individuals such … were successful in that. However, as I said at the start, I think it is dehumanising, whether it is amyloidosis, Friedreich's ataxia or Duchenne muscular dystrophy. It is dehumanising that we put people on that platform. I call it Groundhog Day. As I said to the Minister

people living with Friedreich's ataxia time is something they simply do not have. Every delay means more mobility lost, more speech lost and more independence taken away. Families such as Emily Felix and her family in Kilkenny, Oisín Pollard and his family in Carlow and many others

will come back to the Deputy on it. Deputy Cleere's question was on Friedreich’s ataxia. I think I referenced this earlier. I fully appreciate what the Deputy said. I think he mentioned Emily Felix and Oisín Pollard. I have met quite a number of people

strongly welcome this debate on rare diseases. Only last week, I had the privilege of welcoming young adults living with Friedreich's ataxia, FA, to Leinster House. Tragically, they are waiting and watching their conditions deteriorate rapidly, not due to the lack of medical progress

resource shortages, it only sees the patients every 18 months. This has now been pushed from August to October. Friedreich's ataxia places immense strain on the heart. Emily's cardiac check-up is now delayed far beyond clinical recommendations. That is simply not acceptable. We need adequate

have spoken to the Minister about Paudie Coady. He is 16 years old and has been diagnosed with Friedreich's ataxia. His brother passed away from the same condition last year. It is a terminal condition. It is unbelievable that his father, Craig, has buried

strong and diligent work that they have done in relation to these two drugs. Thankfully, givinostat has been approved but people with Friedreich's ataxia are waiting for Skyclarys to be approved. This inequity is to be found across the entire healthcare sector, including in the areas

while pilots are something, they are by their very nature exclusive. I noted the Minister's comments early on Skyclarys for Friedreich's ataxia. She has to know time is of the essence and every day counts. It is similar for boys with Duchenne muscular dystrophy. I welcome

muscles do not get weaker while waiting for access. I hope access is granted for whoever needs it as soon possible. On Friedreich's ataxia Skyclarys is the only drug that has been shown to slow the disease. It was approved by the EMA and is available

difficult. Cystic fibrosis is very common in Ireland, yet that took ages as well. I echo the calls for the treatments for Friedreich's ataxia and Duchenne muscular dystrophy, DMD, to be approved as quickly as possible. I spoke on that issue a year ago in the Dáil

that we got regarding givinostat. However, we are still waiting for that good news when it comes to skyclarys in relation to Friedreich's ataxia. This something that the Government and the HSE must prioritise, particularly its corporate pharmaceutical unit because, as other Deputies have said, time

made in an appropriate way, but that cuts very little mustard with someone like Craig Coady, who has lost a child through Friedreich's ataxia, and is now worried about his other child. It cuts very little mustard with a parent of a child who has Duchenne muscular

what compassion requires. That is what Independent Ireland believes should be delivered. I wish to ask the Minister of State about Friedreich's ataxia and the medication Skyclarys. Where are we in relation to getting patients access to Skyclarys? The brother of Emma O'Shea in west Cork

best treatments, medicines and supports available. I want to highlight specific conditions which have already been mentioned. Members of the Friedreich's ataxia group are still awaiting approval and access to a drug. There has been some movement on that, which I welcome. I welcome the opportunity

Those parents are not alone in their story. There is a campaign currently under way by parents whose children primarily suffer from Friedreich's ataxia and who urgently require the drug Skyclarys. I understand that matter is at a sensitive stage of negotiations with

Deputy Matt Carthy - To discuss the EU pact on migration and asylum. Deputy Natasha Newsome Drennan - To discuss access to treatment for Friedreich's ataxia under the HSE reimbursement scheme. Deputy Ged Nash - To discuss the recent fish kill on the River Glyde, County Louth. Deputy Pádraig

have discussed this with the Minister for Health. We want all those living with Friedreich's ataxia to have access to Skyclarys as fast as we possibly can. The company made its commercial proposal

line. I have discussed this. I had an official with me yesterday when I met one individual who is living with Friedreich's ataxia and with his parent. The commercial proposal came

measures being taken to ensure there are no further avoidable delays in progressing access to skyclarys for patients living with Friedreich’s ataxia; and if she will make a statement on the matter. [48540/26

Smyth asked the Minister for Health if she will provide an update on the reimbursement process for skyclarys for the treatment of Friedreich's Ataxia; the meetings that have taken place to date regarding the application; when a final decision is expected; and if she will make

Natasha Newsome Drennan asked the Minister for Health the engagements she has had with those advocating on behalf of people living with Friedreich's ataxia; and if she will make a statement on the matter. [46678/26

Deputy Pádraig Rice asked the Minister for Health if the consideration of skyclarys for the treatment of Friedreich's ataxia will be prioritised; the date on which the drug will be on the agenda for a meeting of the HSE Drugs Group; and if she will make

Health if her Department has further considered the inclusion of Skyclarys (omaveloxolone) as of June 2026, 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

Minister for Health the steps she will take to ensure that the HSE recognises and responds to the time-critical nature of Friedreich's ataxia during the current price negotiations for Skyclarys; and if she will make a statement on the matter. [44928/26

Minister for Health if she will ensure Skyclarys is covered by the HSE as it is the only drug approved to treat Friedreich's ataxia; and if she will make a statement on the matter. [45121/26

Deputy Marie Sherlock asked the Minister for Health for an update on the reimbursement process for Skyclarys for persons living with Friedreich’s ataxia; and if she will make a statement on the matter. [45289/26

negotiations between the Health Service Executive Corporate Pharmaceutical Unit and the manufacturer regarding the reimbursement of omaveloxolone (skyclarys) for the treatment of Friedreich's ataxia; if she will address concerns regarding the omission of this life-altering therapy from the immediate agenda of the HSE Drugs Group ahead

Deputy Michael Cahill asked the Minister for Health to make skyclarys available to people living with Friedreich’s ataxia in Ireland (details supplied); and if she will make a statement on the matter. [44828/26

Deputy Pat Buckley asked the Minister for Health to provide urgent access to skyclarys for persons living with Friedreich’s ataxia (FA) here. [44859/26

John Paul O'Shea asked the Minister for Health for an update on the process to have the drug skyclarys eligible for friedreich's ataxia patients in Ireland; and if she will make a statement on the matter. [43153/26

Deputy Niall Collins asked the Minister for Health if there are plans to approve skyclarys (omaveloxolone) for Friedreich's ataxia; and if she will make a statement on the matter. [43394/26

Health the up-to-date position in respect of the application for pricing and reimbursement of skyclarys (omaveloxolone) for the treatment of Friedreich’s ataxia in adults and adolescents aged 16 years and older; and if she will make a statement on the matter. [43399/26

delay aligns with the "equitable access" promised in the newly launched National Rare Disease Strategy 2025-2030, given that persons in the Friedreich’s ataxia community in Ireland are being left behind waiting for a decision regarding the skyclarys reimbursement, while patients across Europe gain access to skyclarys