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Treatment for Friedreich’s ataxia should not be reimbursed by HSE, drug group recommends
Disease causes progressive damage to the nervous system with those affected having shorter life expectancy
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irishtimes.com
Timeline cronologica
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Woman says time running out for her as HSE delays decision on Friedreich’s ataxia drug
Emily Felix has taken legal action in desperate bid to access drug that can slow disease’s progression
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Treatment for Friedreich’s ataxia should not be reimbursed by HSE, drug group recommends
Disease causes progressive damage to the nervous system with those affected having shorter life expectancy
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Father of boy with Friedreich’s ataxia devastated as HSE recommends against drug funding
Craig Coady lost his 13-year-old son Rory to the disease last year and says his other son Paudie had hoped to benefit from the drug
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More than 60 Fianna Fáil politicians oppose HSE refusal to fund Friedreich’s ataxia drug
In open letter, a junior minister, TDs, senators and MEPs called for Skyclarys to be made available for sufferers of rare disease