NPUK’s story
Niemann-Pick UK (NPUK) is a small charity dedicated to supporting individuals and families affected by Niemann-Pick diseases - a group of ultra-rare, life-limiting genetic conditions, which includes both ASMD (acid sphingomyelinase deficiency) and Niemann-Pick disease type C.
At the heart of our work is a unique, specialist care and support service for patients, families, and professionals navigating the often-overwhelming journey that follows diagnosis. What began as a small parent support group more than 30 years ago has grown into a resilient, passionate community - offering knowledge, compassion, and hope.
Through the PM Society’s Creativity for Good initiative, we were incredibly fortunate to collaborate with two wonderful agencies, Verve and Four Health, whose respective teams worked together to create an innovative, awareness-raising resource (and campaign) designed to support clinicians in recognising the signs of ASMD Niemann-Pick disease type B. Tools like this are vital: they accelerate diagnosis, reduce isolation, and bring families into the fold of care and connection sooner. The potential here is absolutely huge, and we couldn’t be more appreciative for this collaboration.
As a small charity, we could not have delivered this on our own. Thanks to the generosity of this programme and the skill of the team involved, we’ve taken a significant step toward improving earlier recognition and ultimately improving lives. However in these uncertain times, things are getting increasingly difficult for small charities, and it is only through charitable grants and donations that we are able to continue to offer our vital support service.
Your support makes this possible, so please if you can: Make a donation. Make a difference.
Thank you.
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