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Research

Alongside providing support and care for those living with or affected by Niemann-Pick disease(s), one of our other main areas of focus is providing information relating to research. NPUK shares knowledge, expertise and works in partnership and collaboration with other not-for-profit organisations, medical authorities and scientific institutions across the world, in order to facilitate progress towards therapeutic interventions for Niemann-Pick diseases.

Where possible, NPUK also funds appropriate research in order to improve medical and scientific knowledge and promote understanding of the diseases. The results are often shared amongst our community of families, friends and health professionals at the Annual Family Conference & Interactive Workshop we hold every September (2020 dates TBC due to COVID-19 pandemic). It is through this medical research and clinical trials that we will find innovative new ways in which to better manage Niemann-Pick diseases.

Research

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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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