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We aim to provide up-to-date, comprehensive and practical information and advice for those affected by Niemann-Pick diseases as well as information and resources specifically for health, education and social care professionals. The information we develop covers a broad range of topics to enable you to tailor information for your needs. Please feel free to share any of the resources available. If you have any questions or need further information then please contact us at any time.

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Latest news

06.03.24

NPUK Statement: NICE Olipudase Alfa Decision

Yesterday, we were greatly disappointed to learn that the UK's National Institute for Health and Care Excellence (NICE) has decided not to recommend Sanofi's Xenpozyme (olipudase alfa) as a treatment for acid sphingomyelinase deficiency (ASMD; Niemann-Pick Disease) in people with type AB or type B...

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