18 Mar 2026 · to Health
procedure that would allow for a meeting between the relevant Department staff and 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. [19449/26
18 Mar 2026 · to Health
Deputy Keira Keogh asked the Minister for Health the position regarding the availability of Skyclarys (Omaveloxolone) for those who are living with Friedreich’s ataxia; and if she will make a statement on the matter. [19485/26
18 Mar 2026 · to Health
Deputy 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
18 Mar 2026 · to Health
IPHA framework agreement, which aims for a 180 day decision timeline, are being applied in price negotiations for Skyclarys in the treatment of Freidreich’s ataxia. [19640/26
18 Mar 2026 · to Health
Health the specific steps being taken to ensure the HSE considers the 'time-critical' nature of FA during the current price negotiations for Skyclarys; the way in which the commitments in the National Rare Disease Strategy 2025-2030 and the 2026 IPHA Framework Agreement (which aims
18 Mar 2026 · to Health
ensure that the HSE recognises and responds to the time-critical nature of Friedreich’s ataxia in the ongoing price negotiations for Skyclarys (Omaveloxolone); the way in which the commitments contained within the National Rare Disease Strategy 2025–2030 and the 2026 IPHA Framework Agreement, including
18 Mar 2026 · to Health
Deputy Pearse Doherty asked the Minister for Health if consideration has been given to prioritise the reimbursement of Skyclarys (omaveloxolone) under the current drugs reimbursement process for the treatment for Friedreich's Ataxia; and if she will make a statement on the matter. [19753/26
18 Mar 2026 · to Health
Deputy Carol Nolan asked the Minister for Health if she will intervene to ensure that the HSE prioritises a conclusion to the skyclarys reimbursement negotiations, given that it is the only available treatment for this progressive disease and represents a clear unmet need under the National Rare Disease
18 Mar 2026 · to Health
Deputy Carol Nolan asked the Minister for Health if she will intervene to ensure that the HSE prioritises a conclusion to the Skyclarys reimbursement negotiations, given that it is the only available treatment for Friedreich's ataxia disease and represents a clear unmet need under the National Rare
18 Mar 2026 · to Health
Deputy Denise Mitchell asked the Minister for Health if she will intervene to ensure that the HSE prioritises a conclusion to the Skyclarys reimbursement negotiations, given that it is the only available treatment for this progressive disease and represents a clear unmet need under the National Rare Disease
18 Mar 2026 · to Health
taken to ensure that the HSE recognises and responds to the time-critical nature of Friedreichs Ataxia during the current price negotiations for Skyclarys; and if she will make a statement on the matter. [20158/26
18 Mar 2026 · to Health
Agreement which aims for a 180-day decision timeline being applied in the case of ensuring Friedreichs Ataxia patients in Ireland can access Skyclarys; and to prevent further delays in addressing this clear unmet need; and if she will make a statement on the matter. [20159/26
18 Mar 2026 · to Health
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 outlined in the National Rare Disease Strategy 2025-2030, and the 2026 IPHA Framework Agreement which aims
18 Mar 2026 · to Health
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. [20251/26
18 Mar 2026 · to Health
time critical and progressive nature of Friedreich's Ataxia is fully recognised and acted upon during the ongoing price and reimbursement negotiations for skyclarys, given the significant risk of irreversible decline for patients during prolonged delays. [20488/26
18 Mar 2026 · to Health
National Rare Disease Strategy 2025-2030 particularly those relating to timely access to innovative therapies are being applied in the case of skyclarys. [20489/26
18 Mar 2026 · to Health
Agreement is being implemented in practice for rare disease medicines; and the reason this timeline has not been met in the case of skyclarys for Friedreich's Ataxia patients. [20490/26
18 Mar 2026 · to Health
Deputy Erin McGreehan asked the Minister for Health whether her Department or the HSE has considered establishing an Early Access Programme for skyclarys, in light of the progressive and time sensitive nature of Friedreich's Ataxia, so that patients can access the treatment while reimbursement negotiations are ongoing
18 Mar 2026 · to Health
Deputy Niall Collins asked the Minister for Health if she will ensure that the HSE prioritises a conclusion to the Skyclarys reimbursement negotiations, given that it is the only available treatment for a progressive disease Friedreich's Ataxia (FA), which currently can be classed as having an ‘unmet
5 Mar 2026 · to Health
specific steps being taken to ensure the HSE considers the time-critical nature of Friedreich’s ataxia during the current price negotiations for Skyclarys, the only drug approved for treatment of this condition, given the 570 days since the application for use was lodged and the rapid progression
5 Mar 2026 · to Health
which the commitments in the National Rare Disease Strategy 2025 – 2030 are being applied to the approval process for the drug Skyclarys used to treat Friedrich's ataxia to prevent further delays in addressing the unmet need of sufferers; and if she will make a statement
5 Mar 2026 · to Health
Framework Agreement on access to new and innovative medicines which aims for a 180-day decision timeline is being applied to the drug Skyclarys used to treat Friedrich's ataxia to prevent further delays in addressing the unmet need of sufferers; and if she will make a statement
5 Mar 2026 · to Health
Deputy Alan Kelly asked the Minister for Health if she will intervene to ensure that the HSE prioritises a conclusion to the Skyclarys reimbursement negotiations, given that it is the only available treatment for this progressive disease, which currently can be classed as having an ‘unmet need
5 Mar 2026 · to Health
Deputy Alan Kelly asked the Minister for Health her views on whether the current delay regarding the Skyclarys reimbursement negotiations aligns with the "equitable access" promised in the newly launched National Rare Disease Strategy 2025-2030; and if she will make a statement on the matter. [17959/26
4 Mar 2026 · to Health
Deputy Ciarán Ahern asked the Minister for Health the reason Skyclarys has not yet been approved for reimbursement despite being authorised for use by the European Medicines Agency; and if she will make a statement on the matter. [17273/26