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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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irishtimes.com
Timeline cronologica
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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