The International Niemann-Pick Disease Alliance (INPDA) is a global network of organisations dedicated to supporting those affected by Niemann-Pick diseases. By fostering collaboration among patient groups, researchers, and healthcare professionals, INPDA drives advocacy, awareness, and research to improve outcomes for the Niemann-Pick community worldwide.
The International Niemann-Pick Disease Registry (INPDR) is a global initiative to collect and share data on Niemann-Pick disease patients, enhancing research and treatment development. By enrolling patients and carers, it creates a vital resource for understanding these rare conditions and advancing clinical trials. Join the registry by visiting their website.
The UK LSD Collaborative unites experts and organisations to advance research, care, and support for lysosomal storage disorders, including Niemann-Pick diseases. Through shared expertise and advocacy, it aims to improve diagnosis, treatment, and patient outcomes across the UK. Learn more at their dedicated pages or through our network.