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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.

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Latest news

20.01.21

MNK Announcement Jan 2021

We have received the following statement from Mallinckrodt Pharmaceuticals, stating their intention to discontinue clinical development of adrabetadex (VTS-270) for Niemann-Pick Type C1 disease (NPC), effective immediately. We understand that this will be very difficult news for many within our community; the NPUK team will be available if you would like to contact us: email info@npuk.org or telephone 0191 415 06 93.

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19.01.21

UK Disability Survey

The government has just announced a new UK Disability Survey and we want to hear from as many people as possible. They are particularly keen to hear from disabled people, their carers, friends and family but views from the wider public are also very welcome. The survey will remain open until 23rd April, and all views will be used to shape the delivery of the plans we set out in the Strategy with those that we receive by 13th February informing its development.

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