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Supporting those affected by Niemann-Pick diseases

NPUK 25th Annual Family Conference & Interactive Workshop

Our 25th Annual Family Conference will be held next September at Wyboston Lakes, please get in touch with us at info@npuk.org for further details

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Latest news

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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20.09.17

Route of Administration Preferences Study

There is an opportunity for you to participate in a market research study about Niemann-Pick Type C, conducted by an organization called ApotheCom on behalf of an industry sponsor. The goal of the study is to understand your preferences and concerns regarding the method through which a drug could be administered to manage Niemann-Pick Type C.

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