Niemann-Pick Disease Type C

Overview: 

• NPC Disease Type C Summary
• Living with NP-C
• 1 An Introduction to NP-C
• 2 Coping with a Diagnosis
• 3 Living with NP-C
• 4 Where to Find Additional Help and Support
• 5 End of Life Choices Booklet
• Emergency Care Plan
• What You Need to Know About NP-C (Portuguese)
• Niemann-Pick Carrier’s Rights – CARTILHA DIREITOS DO PORTADOR (Portuguese)
• Symptoms to Diagnosis – DO  SINTOMA AO DIAGNÓSTICO (Portuguese)
• Chinese Foundation – Care Manual (Chinese)

Symptoms: 

• Ataxia (English) / Ataxia (Portuguese)
• Blepharitis
• Cataplexy (English) / Cataplexia (Portuguese)
• Cognitive Dysfunction
• Dysarthria (English) / Dysarthia (Portuguese)
• Dysphagia (English) / Dysphagia (Portuguese)
• Dyspraxia (Portuguese)
• Dystonia
• Epilepsy
• Psychiatric Concerns
• Respiratory
• Sleeping
• Vertical Supranuclear Gaze Palsy
• Think Again Think NP-C Infographic

Parent’s Perspectives:

• Andrew A – Journey
• Sue and Geoff Whyler’s Story
• Louise Wray’s Story
• Louise Sibling of Andrew – David Wray
• David Wray’s Story
• Dana Smith’s Story
• Hollie’s NP-C Journey

Useful Articles:

• Difficult Conversations for_Young_Adults
• Understanding_NP-C_(Adult Patients)
• Niemann-Pick Disease Passport_(Children)
• Understanding_NP-C_(Children)
• Dementia in Children, Teenagers and Young Adults

For Health Professionals: A Guide to the Recognition and Referral of Niemann-Pick type C Disease:

Think Again. Think NP-C Educational Slide Deck

What is NP-C? (Provided by NPUK):

Forgotten Youth (Introductions):

Forgotten Youth – An Introduction

Gioventù Dimenticata – Un Introduzione

JEUNESSE OUBLIEE

Juventud Olvidada – Introducción

Vergessene Kindheit 被遗忘的青春 – 简介

 

Forgotten Youth (Videos):

Forgotten Youth (English):

Forgotten Youth (Deutsch):

Forgotten Youth (Français):