raise an issue relating to rare diseases. The Leas-Cheann Comhairle and I recently attended a meeting with sufferers of Friedreich's ataxia. The Tánaiste will be aware of the quest by people with Duchenne muscular dystrophy to have givinostat approved. I do not expect him to comment
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2 in debates · 25+ in questions
In debates
serious issue affecting a young woman from my constituency. Emma O’Shea is just 26 years old and is living with Friedreich's ataxia. This is a cruel, fast-moving disease and every month that passes Emma loses more of her independence. There is a treatment called Skyclarys
In parliamentary questions
Robert Troy
Written
Robert Troy asked the Minister for Health the position regarding the price negotiations on the approval of Skyclarys for the treatment of Friedreich’s Ataxia; the specific steps that are being taken to ensure the HSE considers the time critical nature of Friedreich’s ataxia during the current
Rose Conway-Walsh
Written
Minister for Health when she expects an outcome from the application for pricing and reimbursement of omaveloxolone (Skyclarys) for the treatment of Friedreich’s Ataxia in adults and adolescents aged 16 years and older; if not yet known, the efforts that will be made in the interim … support those diagnosed with Friedreich’s Ataxia who are waiting on the outcome of this process; and if she will make a statement on the matter. [18722/26
Rose Conway-Walsh
Written
Conway-Walsh asked the Minister for Health the specific steps being taken to ensure the HSE recognises the time-critical nature of Friedreich’s Ataxia during the current price negotiations for Skyclarys; how the commitments in the National Rare Disease Strategy 2025–2030 and the 2026 IPHA Framework … Agreement are being applied to this case to prevent further delay for those with a Friedreich’s Ataxia diagnosis; and if she will make a statement on the matter. [18723/26
Jen Cummins
Written
Cummins asked the Minister for Health the specific steps are being taken to ensure the HSE recognises 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. [22549/26
Jen Cummins
Written
decision timeline is being applied to the case to prevent further delay in addressing the need of people with Friedreich’s ataxia. [22550/26
Michael Collins
Written
intervene to ensure the HSE prioritises a conclusion to the reimbursement negotiations for skyclarys, given it is the only available treatment for Friedreich’s ataxia and the unmet clinical need recognised in the national rare disease strategy 2025–2030; and if she will make a statement
Paul Murphy
Written
Paul Murphy asked the Minister for Health the specific steps being taken to ensure the HSE considers the time-critical nature of Friedreich’s ataxia during the current price negotiations for skyclarys; and the way in which the commitments in the National Rare Disease Strategy
Jennifer Whitmore
Written
Deputy Jennifer Whitmore asked the Minister for Health whether she will consider funding the medication skyclarys for people living with Friedreich’s ataxia; and if she will make a statement on the matter. [22147/26
Naoise Ó Muirí
Written
ensure that the HSE prioritises the conclusion of reimbursement negotiations for skyclarys, given that it is currently the only available treatment for Friedreich’s ataxia and is identified as addressing an unmet need under the National Rare Disease Strategy 2025–2030; and if she will make a statement
John Clendennen
Written
John Clendennen asked the Minister for Health for an update on the accessibility of Omaveloxolone (brand name Skyclarys) for the treatment of Friedreich’s ataxia; and if she will make a statement on the matter. [21312/26
Pádraig Mac Lochlainn
Written
Minister for Health the current status of the assessment, pricing negotiations and potential reimbursement approval for Skyclarys (omaveloxolone) for the treatment of Friedreich's Ataxia (FA) in Ireland; when patients can expect a decision on access to this medicine; and if she will make a statement
Micheál Carrigy
Written
Deputy Micheál Carrigy asked the Minister for Health the steps being taken to ensure the HSE considers the "time-critical" nature of Friedreich's Ataxia during the current price negotiations for Skyclarys; the way in which the commitments in the National Rare Disease Strategy
Seán Canney
Written
Deputy Seán Canney asked the Minister for Health when the drug Skyclarys will be reimbursed for patients with Friedreich’s Ataxia (details supplied); and if she will make a statement on the matter. [18731/26
Albert Dolan
Written
asked the Minister for Health the status of the HSE and Department of Health assessment of Omaveloxolone (Skyclarys) for the treatment of Friedreich’s Ataxia; the timeline for completing the reimbursement process; the engagement that has taken place with patient representatives and clinical experts; and if she will
Albert Dolan
Written
Albert Dolan asked the Minister for Health the specific steps the HSE is taking to ensure that the time-critical nature of Friedreich’s Ataxia is fully recognised and reflected in the ongoing price negotiations for the reimbursement of Skyclarys; and if she will make a statement
Albert Dolan
Written
access to approved therapies for rare disease patients, are being applied to the current reimbursement process for Skyclarys for the treatment of Friedreich’s Ataxia; and if she will make a statement on the matter. [18746/26
Louis O'Hara
Written
Deputy Louis O'Hara 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. [18769/26
Louis O'Hara
Written
asked the Minister for Health the specific steps that are being taken to ensure the HSE recognises 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. [18770/26
Sorca Clarke
Written
Clarke asked the Minister for Health to outline the current status of the reimbursement application for skyclarys (omaveloxolone) for the treatment of Friedreich’s ataxia; if she will provide a detailed update of ongoing engagement between the HSE and the manufacturer; and the way in which the commitments
Mairéad Farrell
Written
Minister for Health the steps being taken to ensure that the HSE recognises and responds to the time-critical nature of Friedreich’s ataxia during the current price negotiations for skyclarys; the way in which the commitments, which are outlined in the National Rare Disease Strategy
Paul Lawless
Written
Deputy Paul Lawless asked the Minister for Health the measures in place to ensure HSE price talks for skyclarys take account for Friedreich’s ataxia time-sensitive progression. [19311/26
Alan Kelly
Written
Deputy Alan Kelly asked the Minister for Health if she will commit to make the treatment omaveloxolone available for suffers of Friedreich’s ataxia; and if she will make a statement on the matter. [19427/26
Barry Ward
Written
position regarding a timeline for the completion of the assessment of the proposal for reimbursement of Skyclarys for patients with Friedreich’s ataxia; and if she will make a statement on the matter. [19446/26
Barry Ward
Written
Health if any submissions can be consider as part of the assessment of the proposal for reimbursement of Skyclarys for patients with Friedreich’s ataxia; and if she will make a statement on the matter. [19447/26
Barry Ward
Written
Health if she will facilitate a meeting with the campaign group that are seeking State funded reimbursement of skyclarys for patients with Friedreich’s ataxia; and if she will make a statement on the matter. [19448/26
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