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About Us

Niemann-Pick UK (NPUK) is a charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. We raise much needed awareness, provide practical and emotional support, advice and information and facilitate research into potential therapies.

We are a small charity with less than five hundred members, the work we do is funded entirely through fundraising activities and successful grant applications. Our strength, therefore, comes from the dedication of our much valued families, members, benefactors and volunteers who work with tremendous effort and loyalty in support of the charity.

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Latest news

20.11.17

Orphazyme’s CEO, Anders Hinsby: Letter to NP-C Community

A letter to the NPC community from Orphazyme’s CEO, Anders Hinsby. We are please to also provide translations (from English into German, French, Spanish, Italian, Polish) of this letter.

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05.10.17

Update #17 on the AIDNPC Clinical Programme

The study was recently completed in May 2017. A total of 35 patients were enrolled across 12 sites in 8 countries. The primary objective of the 001 study was to characterize the individual patient’s disease progression profile through clinical, biological and quality-of-life measures recorded prospectively, as well as the historic disease information collected from patient medical records.

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