931. Deputy 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 2025-2030 and the 2026 IPHA Framework Agreement (which aims for a 180-day decision timeline) are being applied to this specific case, to prevent further delays in addressing the unmet need. [21864/26]

Summary

931. Deputy 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 2025-2030 and the 2026 IPHA Framework Agreement (which aims for a 180-day decision timeline) are being applied to this specific case, to prevent further delays in addressing the unmet need. [21864/26]

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