Niemann-Pick UK

Who we are

NPUK is a charitable organisation offering support and information to families affected by Niemann-Pick diseases (NPD) and to associated professionals. Our aim is to make a positive difference to the lives of those affected, their families and friends, through the provision of care and support, accurate information and the promotion of relevant research. We provide practical and emotional support from diagnosis, to bereavement and beyond, and through our mutual support networks, we help to reduce feelings of isolation and despair.

Working with us means you are joining a dedicated team of staff, trustees and volunteers who are all passionate about making a difference for our rare community. 

Our vision is a world where the burden of Niemann-Pick disease is minimised, those affected have access to effective therapies, are able to meaningfully participate in society, reach their full potential and achieve the best quality of life possible.

Our mission is to increase awareness of Niemann-Pick disease amongst health professionals and the wider general public, to shorten time to diagnosis and enable research into effective therapies, ensuring that each affected individual has access to the best available treatment, support and information appropriate to their needs.

Our Charitable Objectives are to relieve sickness, and any distress which may arise therefrom, and to advance the education and awareness of families, professionals and the general public in all matters concerning the disease