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Here at NPUK you will regularly find us working with other like-minded organisations, such as those that support other connected rare diseases and other charities who share our main concerns and hopes. We have a track-record of successful collaborations with organisations that operate in line with our focus and commitment to improving the lives of those affected with Niemann-Pick disease and other rare diseases.

We work and connect with other organisations both nationally and internationally, enabling us to develop a stronger, more united voice, to share knowledge and to access specialist information. Through our collaborations we will be able to achieve common goals, make a greater impact and accomplish more on behalf of those we support.

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Latest news

04.04.20

"Time to Talk" (Virtual Elevenses - Webinar Series)

At this time of social distancing, it has never been more important to stay in touch. Being able to see each other’s faces and to reach out virtually to those we love and miss is essential. This virus may be isolating us but it is also uniting us – more than ever, we are in this together. We are vulnerable together, anxious together, sad together, scared together, and – most importantly - hopeful...

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27.03.20

A message from Orphazyme to the global community of patients, family members and healthcare providers impacted by the corona virus pandemic (COVID-19):

In the days and weeks to come, Orphazyme will continue to communicate openly with patient organizations and clinical trial investigators around the globe to share the latest information regarding our efforts as the situation develops. Meanwhile please utilize attached FAQs to answer questions if any about our trials...

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