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Publications

Niemann-Pick type C disease: A practical guide for parents and carers: An introduction to NP-C

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

File size: 863 KB Download
Niemann-Pick type C disease: A practical guide for parents and carers: Coping with a Diagnosis

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

File size: 593 KB Download
Living with NPC: A practical guide for parents and carers

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

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

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: 9 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: 39 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
Cognitive Dysfunction

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
Dysarthia

Symptom Card: Dysarthia

File size: 126 KB Download
Dysphagia

Symptom Card: Dysphagia

File size: 178 KB Download
Dystonia

Symptom Card: Dystonia

File size: 130 KB Download
Epilepsy and Seizures

Symptom Card: Epilepsy and Seizures

File size: 184 KB Download
Emergency Care Plan

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

A Guide to ASMD Niemann- Pick Disease Types A and B for Healthcare Professionals

The booklet brings together a wide range of information which should be useful to everyone involved in the treatment of patients with ASMD Niemann-Pick disease types A and B.

File size: 30 MB Download

A Guide to Niemann-Pick Disease Type C for Healthcare Professionals

The booklet brings together a wide range of information which should be useful to everyone involved in the treatment of patients with Niemann-Pick disease type C (NPC).

File size: 32 MB Download

Consensus clinical management guidelines for acid sphingomyelinase deficiency (Niemann–Pick disease types A, B and A/B)

There are no published national or international consensus guidelines for the diagnosis and management of patients with Acid Sphingomyelinase Deficiency (ASMD). For these reasons, we have developed the following clinical guidelines.

File size: 2 MB Download
Publications

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08.02.24

2024 Regional Family Days: Save the Dates!

We're pleased to announce this year's Regional Family Days, designed to bring our community together for support and solidarity. Here's the schedule...

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