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:
Associacion Niemann Pick de Argentina
Australian NPC Disease Foundation
mandy@npcd.org.au / kellie@npcd.org.au
Associação Niemann Pick Brasil – ANPB
contato@niemannpickbrasil.org.br
Canadian Chapter of the National Niemann Pick Disease Foundation (CCNNPDF)
中国尼曼匹克关爱中心
China Niemann-Pick Disease Association
Vaincre Les Maladies Lysosomales (VML)
Niemann Pick Selbsthilfegruppe
Associazione Italiana Niemann Pick
Volwassenen, Kinderen en Stofwisselingsziekten (VKS)
NP Foreningen I Norge
Foundacion Niemann-Pick de Espana (FNP)
Niemann Pick Suisse
Niemann-Pick UK (NPUK)
National Niemann-Pick Disease Foundation (NNPDF)
Taiwanese Niemann-Pick Group
20.01.21
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 more19.01.21
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
