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We support over 500 conditions

We offer help to 195 countries

We support over 20,000 people

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Latest news

Tyrosinaemia Type One Recomended for Screening

2nd February 2023

The UK NSC has recommended that TYR1 should be added to the UK newborn screening panel

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A momentous milestone for people living with HPP

1st February 2023

Final Draft Guidance Recommends Asfotase alfa (Strensiq) for use for the treatment of Paediatric-onset HPP

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The England Rare Disease Action Plan

19th January 2023

Back in 2022 we launched our England Rare Disease Explainer series highlighting the priorities and actions of this plan, want to revisit them?

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Read our 10 year strategy

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