World According to Me:

Award Winning Observations of a Disabled Person

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FAlling at the Fourth Hurdle

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There is a treatment available for people with my condition. It was fast-tracked by the Food and Drug Administration (FDA) in America and has been available there since Summer 2023. The UK medicines regulator (MHRA) approved Omaveloxolone (Skyclarys) in April 2025. It remains unavailable to NHS users in the UK. But why?

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2 responses to “FAlling at the Fourth Hurdle”

  1. We’re already in a VERY bad place. – World According to Me: Avatar
    We’re already in a VERY bad place. – World According to Me:

    […] are life-changing drugs that are unaffordable, more and more people are being pushed into poverty, pollution is all around us and the world is on […]

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  2. Time For Action! – World According to Me: Avatar
    Time For Action! – World According to Me:

    […] waiting for people with Friedreich’s Ataxia to have a cause to fight for! I blogged about the first treatment available for our condition and how it is not being made available in the UK at the end of 2025. Since then, the FA community in the UK has stepped up to challenge […]

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