Results 1-16 of 16 for in 'Dáil debates' segment:8857335

Rare Diseases: Statements (6 Mar 2024)

Violet-Anne Wynne: I will begin by acknowledging the various constituents who took the time to reach out to me to inform me and relay their personal stories, in some cases, reliving the inevitable trauma they experienced. They encouraged me to support the Get Rare Aware campaign and Rare Diseases Ireland. I thank them for their continued passionate advocacy. I also remember the 12% of children with rare...

Rare Diseases: Statements (6 Mar 2024)

Seán Canney: We will now go back to the Government.

Rare Diseases: Statements (6 Mar 2024)

Hildegarde Naughton: Are there no more speakers? Is it the closing statement?

Rare Diseases: Statements (6 Mar 2024)

Seán Canney: Yes.

Rare Diseases: Statements (6 Mar 2024)

Hildegarde Naughton: I thank all the Deputies who participated in the debate for their interest and contributions on this important topic. Many rare conditions are both severe and complex and patients can face multiple challenges, including difficulties accessing appropriate medication. The development of a successor to the previous national rare disease plan is a key priority for the Department of Health in...

Rare Diseases: Statements (6 Mar 2024)

Róisín Shortall: Last week, along with other Members of the House, including Deputy Naughten, I had the pleasure of attending the "I Am Number 17" exhibition launch in St. Stephen's Green. The exhibition features 17 people living with rare diseases, reflecting the fact that one in 17 people will be affected by a rare disease at some point in their lives. Putting their stories on display in the heart of our...

Rare Diseases: Statements (6 Mar 2024)

Denis Naughten: I echo the comments by colleagues on access to drugs, expansion of the heel prick test and the implementation plan for rare diseases. It is one thing having a plan but having it implemented is something different. The surprising thing about rare diseases is that despite their name, they are collectively quite common, affecting at least one in 17 people in Ireland, equating to approximately...

Rare Diseases: Statements (6 Mar 2024)

Colm Burke: I was in Farmleigh ten years ago when the then Minister, James Reilly, started dealing with the issue of rare diseases. I am disappointed that we have made very little progress in real terms. While some progress has been made, it is not enough. I refer to the report by the Joint Committee on Health in 2018, which set out approximately 15 or 16 recommendations about access to drugs where...

Rare Diseases: Statements (6 Mar 2024)

Pauline Tully: I welcome the preparation of a rare disease plan, but this should have been commenced long before now. The current plan is six years out of date, because the time period for its implementation was between 2014 and 2018. More than one third of people with rare diseases in Ireland have had to wait more than five years for a diagnosis. Currently, in Ireland, only nine conditions are...

Rare Diseases: Statements (6 Mar 2024)

Rose Conway-Walsh: I am happy to have the opportunity to speak again about the families that have been impacted by valproate. As the Minister knows, Epilim continued to be prescribed to pregnant women, even though there was growing evidence that children of those mothers were being born with fatal valproate spectrum, FVS, disorder. This was a man-made rare disease. It was a preventable disease. Several...

Rare Diseases: Statements (6 Mar 2024)

Duncan Smith: Last week, I met with the Alliance of Rare Diseases Companies Ireland, which made one thing very clear: the current reimbursement system is not fit for purpose. We need a system that is clear, predictable and time-bound, with fixed assessment criteria and, most important, one that facilitates immediate or early access to rare disease therapies. As the Minister mentioned in his own...

Rare Diseases: Statements (6 Mar 2024)

Rare Diseases: Statements (6 Mar 2024)

Stephen Donnelly: I will be sharing my time with Deputy Pádraig O'Sullivan. Rare diseases, as we know, are anything but rare. There are now more than 6,000 known rare diseases. One in 17 people in Ireland has a rare disease, which is 300,000 people. When you include the mums and dads, the brothers and sisters, and the sons and daughters who live with all of those people with a rare disease, it is...

Rare Diseases: Statements (6 Mar 2024)

Pádraig O'Sullivan: I thank the Minister for taking the time to be here. I also thank Deputy John Lahart who cannot be here today. He has given me some of his time, which I appreciate. The Minister will be glad to hear that I will start on a positive note by acknowledging the role he has played over the last few years in making progress on this issue. Much of this has been outlined by the Minister in his...

Rare Diseases: Statements (6 Mar 2024)

Emer Higgins: Wait times for access to medicine for those with rare diseases is growing. The Alliance of Rare Disease Companies Ireland tells us that Ireland now ranks 31st out of 37 countries when it comes to waiting lists for approval of drugs. Patients are waiting for an average of 877 days for orphan medicinal products to be approved. That is more than two years of uncertainty for them. Six years...

Rare Diseases: Statements (6 Mar 2024)

Cormac Devlin: I welcome the opportunity to contribute to this debate on rare diseases. I would like to welcome the commitment by the Minister to enhance the care and treatment for the more than 300,000 people in Ireland living with rare diseases. Efforts to expand screening of newborns with the new heel prick test is particularly welcome. I know that the new national rare disease plan is being developed...