I 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 but due to what I can only call administrative neglect by the HSE. Skyclarys is a breakthrough drug for those over 16 with FA. It is widely used across European public health systems, yet it remains out of reach here. These families …

Can the HSE simply shut its eyes and pretend it saw nothing? Then we had the Taoiseach stand up here last week and give a different date, adding insult to injury for families already at breaking point. There is no accountability on that side of the House. I have spoken to Emily's family throughout this week. They are devastated. Once again, they have been kicked in the teeth and kicked to the back of the queue. As a mother of four young lads, I find it crippling to see what these parents endure watching their child…

I too would like to wish the Minister of State the best in her new post. A single data centre uses as much energy as the entire city of Kilkenny. In the middle of a housing crisis, this Government has prioritised powering data centres faster than powering new homes across Carlow and Kilkenny. Homes are in urgent need but due to lack of infrastructure they cannot proceed. Nearly one quarter of our entire national grid is consumed by these centres. Ordinary families and workers are subsidising multinational profits. …

The call to stop the Ireland-Israel football match has overwhelming support from the Irish public, yet somehow some Government TDs are trying to paint it as a controversial move. I cannot understand why we need to even think about whether or not it is okay to welcome Israel here. It is an apartheid state that has inflicted mass genocide on the people of Palestine. Let us remember the double standards. When Russia and Belarus invaded Ukraine, it took UEFA and FIFA just four days to ban them, but Israel? Complete ina…

I 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 EU citizens are receiving this transformational drug thanks to support from their governments. Why are the HSE and Irish Government not supporting Irish citizens who urgently need it? At the start of the year, a group of young adults came to the Dáil to tell Members …

They cannot wait any longer. They need it. It is criminal.

I welcome this opportunity to speak about the high standard of skilled workers we have in Ireland and to those students who are coming through our education system right now. This is something we should be very proud of, but it is also an area in respect of which we must be far more ambitious. When it comes to educating our citizens, the sky should be the limit. We need to recognise the achievements of our institutions. We are fortunate to have the South East Technological University, SETU, which has campuses acros…

This evening I want to make it very clear what is at stake. As someone who has spent a significant portion of my adult life working with adults with disabilities, I witnessed the pressures they face. It is not just about heating a home or buying food. It is about the endless hidden costs that the vast majority of people never see. It is about those extra expenses able-bodied people never have to think about; the cost of transport, the need for specialist equipment or how restricted they are, even with transport opt…

As someone who comes from a rural community, the biodiversity crisis facing Ireland is not some abstract concern, it is a visible reality, one that I have watched worsen decade by decade. It is now seven years since a biodiversity emergency was declared in Ireland, yet we are still not acting with the urgency that declaration demands. All stakeholders across the sector - especially in rural communities - need to come together and work collectively on it. The Government must accept that rural Ireland is not just par…

-----not when the cost is our collective well-being.

I thank Deputy Ó Broin for his work on this Private Members' business. The figures published by the RTB last week are beyond staggering. They are grim and show the highest level of eviction notices since the Famine. I do not know if the Minister fully realises the gravity of the housing crisis. A 51% rise in eviction notices means thousands of people across Ireland find themselves in the horrible position of trying to find a new home. If they are lucky enough to find a place, they will undoubtedly be paying far hig…

I believe I speak for many across Ireland when I say how welcome the European Commission's decision to ban Brazilian beef and other food products is. This is a welcome step. It vindicates the serious concerns we in Sinn Féin have raised along with countless others like the IFA, the Irish Farmers' Journal , the ICMSA, the ICSA and many more regarding public health risks posed by Brazilian beef. However, it is deeply disappointing that when I and other Members of the Oireachtas Joint Committee on Agriculture and Food…

I understand the Commission has said the three month delay is to give Brazilian farmers an opportunity to get their house in order. I do not know if the Minister saw the joint report by the IFA and the Irish Farmers' Journal on how brazen and widespread drugs are in Brazilian beef farming. For someone like me from a farming background it is shocking. How the Commission could think the use of banned drugs could be brought under control in a matter of months is beyond me. Once these drugs have been injected into a he…

That is not going to happen.

I want to bring to the Minister of State's attention a road in south Kilkenny, the N25. For years, there has been a campaign to put safety measures in place on this road. It is welcome that the cameras have been put in place, but cameras alone are not going to solve this road. It needs huge attention. I bring to the Minister of State's attention the fact that TII has said that there is enough signage and notice going towards where the cameras are. Numerous people have contacted me and I have driven the road. There …

I strongly welcome these statements. I want to express my solidarity and thanks to all the nurses working and training across Ireland right now. For the many thousands of nurses who have been forced to emigrate by the failed policies of Fianna Fáil and Fine Gael, I want them to know this: we will work to build the conditions that give them the real choice to return home, with secure housing and a good quality of life. Over the past ten years, our health service has paid a heavy price because those in power have fai…

Since the 1920s, the ESB has been at the core of secure electricity generation across the entire State. It did that to great effect, getting power lines out to the most rural communities. The ESB, as a State-owned body, worked to deliver electricity not as commodity for profit but as a resource for the Irish public. Because it operated in the national interest as oppose to in the interests of lining the pockets of stakeholders and investors, the ESB was able to do all of that while providing affordable electricity …

I 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, there is hope. Skyclarys has been rolled out by other EU states with great effect. It is life-changing. However, little progress has been made here. The HSE remains locked into a haggling war over price. For the small number of people suffering with this rare conditio…

It relates to the reimbursement of the money. It has to be done.

This week, we mark Europe Day, a day to recognise the positive contributions the European Union has made to Ireland, to this region and on the world stage. We also need to apply a level of self-criticism to the work of the European Union because it has become painfully clear over the past number of years that the EU has shifted far from its core vision and values. Right now, the EU, in particular the European Commission, does not appear to be acting with respect for the collective position of EU citizens and electe…