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LSD Collaborative Community Survey 2020

In order to support change and improvement in the care and services you receive, Niemann-Pick UK in conjunction with the UK LSD Collaborative are calling for participants in a short, but important survey.

The results of the survey will inform an anonymous report that will be presented to NHS England, Specialist Centres, Home Care providers and other relevant stakeholders, with the aim of influencing change and improvement to future service provision.

Go Make Memories - Award Winning Short

Our latest short film, Go Make Memories, was developed with help from our community, for our community, to raise awareness of Niemann-Pick disease. Since its release in September 2018, it has went on to scoop a number of awards and film festival and we hope its impact is only just beginning.

You can watch the film in full at our YouTube channel @NPUK, make sure to subscribe so as to never miss an update.

NPUK Annual Family Conference

Our Annual Family Conference & Interactive Workshop is the biggest event in our calendar, bringing together families and friends alongside leading researchers/scientists working in the field of NPD. It is a truly special weekend for every member of the "NPUK Family", and is always much anticipated.

Due to the COVID-19 pandemic we are developing a digital version of the "normal" Conference programme, which we hope will be just as engaging and informative as our usual physical event. Stay tuned for more updates!

Coronavirus Updates: @NiemannPickUK

We are doing everything we can to support our community at this challenging time - details and developments surrounding Coronavirus (COVID-19) change frequently, and we are dedicated to keeping you updated, and safe.

Please regularly check this website (blog/news section), and also our social media channels: Facebook @NiemannPickUK, Twitter @NiemannPickUK, Instagram @niemannpickuk and YouTube @NPUK

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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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