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INPDA

NPUK is a member of the International Niemann-Pick Disease Alliance (INPDA). The INPDA is a global network of non-profit organisations supporting those affected by Niemann-Pick disease and was formed in 2009. It aims to relieve sickness and distress amongst families affected by Niemann Pick disease worldwide. It does this through sharing expertise, knowledge and skills across the network, providing mutual support between patient groups, improving information and awareness of Niemann-Pick disease and stimulating research.

Find out more at inpda.org.

Members include:

ArgentinaAssociacion Niemann Pick de Argentina

www.npcargentina.org

info@npcargentina.org

 

 

Australia-flagAustralian NPC Disease Foundation

www.npcd.org.au

mandy@npcd.org.au / kellie@npcd.org.au

 

 

Brazil-flagAssociação Niemann Pick Brasil – ANPB

www.niemannpickbrasil.org.br

contato@niemannpickbrasil.org.br

 

 

 

canadaCanadian Chapter of the National Niemann Pick Disease Foundation (CCNNPDF)

www.nnpdf.ca

nnpdf@nnpdf.org

 

 

China-flag中国尼曼匹克关爱中心

China Niemann-Pick  Disease Association

http://chinanpd.org.cn/

chinanpd@sina.cn

 

 

franceVaincre Les Maladies Lysosomales (VML)

scientifique@vml-asso.org

www.vml-asso.org

 

 

 

germanyNiemann Pick Selbsthilfegruppe

www.niemann-pick.de

info@niemann-pick.de

 

 

 

italyAssociazione Italiana Niemann Pick

www.niemannpick.org

info@niemannpick.org

 

 

 

netherlandsVolwassenen, Kinderen en Stofwisselingsziekten (VKS)

www.stofwisselingsziekten.nl

info@stofwisselingsziekten.nl

 

 

2 Norway

NP Foreningen I Norge

siriskollerud@yahoo.com

 

 

 

spainFoundacion Niemann-Pick de Espana (FNP)

www.fnp.es

 

 

 

swissNiemann Pick Suisse

www.npsuisse.ch

contact@npsuisse.ch

 

 

 

 

ukNiemann-Pick UK (NPUK)

www.npuk.org

info@npuk.org

 

 

usaNational Niemann-Pick Disease Foundation (NNPDF)

www.nnpdf.org

nnpdf@nnpdf.org

 

 

Taiwanese Niemann-Pick Group2000px-Flag_of_the_Republic_of_China.svg

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.

Read more

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.

Read more
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