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  1. 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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  2. 05.01.21

    Cyclo Therapeutics Announces Positive Efficacy Data from Extension Protocol with Trappsol® Cyclo™ in Patients with Niemann-Pick Disease Type C

    Home-based intravenous infusions of Trappsol® Cyclo™ for up to one year show improvement in disease features or disease stabilization...

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  3. 05.01.21

    NPUK 2020 Support Fund

    In recognition that many in our community are being impacted by the events of 2020, Trustees of NPUK and The Hollie Foundation, in recognition of their shared goals, have designated funds to create a new grant scheme for patients and families. The aim of this fund is to assist those experiencing hardship or unexpected expense, which threatens to impact their physical or mental well-being...

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  4. 28.12.20

    Orphazyme Provides Regulatory Update on Arimoclomol for NPC

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  5. 21.12.20

    Latest information for clinically extremely vulnerable adults and children

    Both the British Inherited Metabolic Disease Group (BIMDG) and the Royal College of Paediatrics and Child Health (RCPCH) have issued guidance on how clinically extremely vulnerable (CEV) adults and children will be assessed during lockdown...

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