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Research

Alongside providing support and care for those living with or affected by Niemann-Pick disease, 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 the Niemann-Pick disease.

Where possible, NPUK also funds appropriate research in order to improve medical and scientific knowledge and promote understanding of the disease. The results are often shared amongst our community of families 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 disease.

Research

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Latest news

16.07.20

Mallinckrodt Pharmaceuticals Statement: Adrabetadex for NPC-1

Please take a moment to read this important announcement from Mallinckrodt Pharmaceuticals in regard to the clinical trial of Adrabetadex for NPC-1. We recognise that this may be a surprising and disappointing development for our community as a whole. Please be assured that we are advocating for further, clearer information and will follow up with our response and next steps shortly.

Sandra Cowie, President, INPDA
Joslyn Crowe, Executive Director, NNPDF
Toni Mathieson, Chief Executive, NPUK

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