International Niemann–Pick Disease Alliance

Impact of NPC: Global Community

The global community (made up of patients, parents, family members, friends, and professionals working in the field of Niemann-Pick disease)  have joined together to help illustrate the challenges and day-to-day struggles of those affected by Niemann-Pick disease type C (NPC). Please click the links below to read more:

Living with NPC: National Niemann-Pick Disease Foundation (NNPDF)

Many thanks to our friends at the National Niemann-Pick Disease Foundation (NNPDF) for providing the following videos which help to capture the true impact of Niemann-Pick disease type C through the voices of those affected:


Living with NPC: The Poincilit Family

The Impact of NPC: Scarlet & Ben James (NPUK)

Go Make Memories (NPUK Community Project)

Join the Registry

Calling all patients and carers! We've created a global registry of all NPD patients - if you're not enrolled yet, join us now...

The Impact of NPC

The global community tell their stories...