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Publications

A Practical Guide for Parents and Carers: An Introduction to Niemann-Pick Type C Disease

File size: 863 KB Download

A Practical Guide for Parents and Carers: Coping With a Diagnosis

File size: 593 KB Download

A Practical Guide for Parents and Carers: Living With Niemann-Pick Type C Disease

File size: 577 KB Download

A Practical Guide to Acid Sphingomyelinase Deficiency Niemann-Pick Disease type B

File size: 517 KB Download

A guide to ASMD Niemann-Pick disease types A and B

File size: 864 KB Download

Niemann-Pick type C Disease: Journey to Diagnosis

File size: 1 MB Download

NPUK: Our Care & Support Services

This brochure gives an overview of the care and support services NPUK offers.

File size: 4 MB Download

NPUK: Fundraising Guide

The NPUK Fundraising Guide tells you everything you need to know about raising donations for Niemann-Pick UK!

File size: 4 MB Download

Symptom Card: Vertical Supranuclear Gaze Palsy

File size: 143 KB Download

Symptom Card: Sleeping Issues

File size: 144 KB Download

Symptom Card: Psychiatric Concerns

File size: 147 KB Download

Symptom Card: Respiratory Problems

File size: 144 KB Download

Symptom Card: Cognitive Dysfunction

File size: 221 KB Download

Symptom Card: Cataplexy

File size: 138 KB Download

Symptom Card: Ataxia

File size: 122 KB Download

Symptom Card: Dysarthia

File size: 126 KB Download

Symptom Card: Dysphagia

File size: 178 KB Download

Symptom Card: Dystonia

File size: 130 KB Download

Symptom Card: Epilepsy and Seizures

File size: 184 KB Download

Symptom Card: Emergency Care Plan

File size: 143 KB Download

David’s Story

File size: 2 MB Download

Louise’s Story

File size: 1 MB Download

Sue and Geoff’s Story

File size: 2 MB Download

Consensus Clinical Management Guidelines for Niemann-Pick Disease Type C

The work of Dr Tarekegn Geberhiwot, and the many expert professionals involved in creating the INPDR has resulted in 'The Consensus Clinical Management Guidelines for NP-C', which provides an excellent resource for the wider NPD community.

File size: 917 KB Download
Publications

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Latest news

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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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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