NPUK provides a unique care and support service to families and friends affected by Niemann-Pick disease. The service has been developed over a number of years and is closely monitored to ensure that each activity is of value and benefit to the community we support.
Our staff team are available to offer advice and support regarding all aspects of Niemann-Pick disease, to provide reassurance or just a friendly voice at the end of the phone. Some of the services we provide include:
Learn more about ‘Our Care and Support Services’ in our official brochure below, available for download in full here.
NPUK recognises the need to provide current and relevant information regarding all aspects of Niemann-Pick disease. We produce a wide range of informative materials and educational resources to assist families, friends and professionals in dealing with all aspects of the Niemann-Pick disease. These are regularly updated to reflect the changing needs of those we support:
NPUK’s Board of Trustees is made up of people who have family members or friends directly affected by this group of diseases. We understand the urgency to find effective therapies and the fact that progress never seems to be fast enough. This understanding is at the heart of our research strategy. Facilitating progress towards therapeutic interventions for Niemann-Pick diseases is central to everything we do at NPUK and has been since the organisation formed in 1991.
We actively encourage Niemann-Pick disease research through the relationships we foster and the networks we contribute to. By sharing knowledge and expertise and by working together, we believe progress will be even faster. In addition, we actively pursue opportunities to facilitate research and clinical trials here in the UK.
Every year we hold an Annual Family Conference which offers you the opportunity to hear the latest developments from around the world, with presentations by experts in the field of Niemann-Pick diseases providing an overview of the latest information regarding research, therapies and related care issues, plus breakout sessions and workshops tailored to your needs. It also provides an opportunity to network with other families, friends and professionals from around the world – here is just a small glimpse into the atmosphere that makes it so special: