Welcome - Niemann-Pick disease type C Community

What is Niemann-Pick disease type C ?

Niemann-Pick disease type C (completely distinct from types A and B) is a complex lysosomal lipidosis resulting in hepatosplenomegaly and progressive neurological involvement.

Source: Orphanet

Niemann-Pick disease type C Resources

More members stories

Latest Member Stories

Forgotten Youth

by christophpoincilit published 3 months ago
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Achieving a diagnosis of NP-C can be challenging in patients of any age, however it can be especially so in adult patients. Symptoms of NP-C can b...

Our little fighter

by LoveUHayden published 6 months ago
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We wanted a second child. It was a difficult pregnancy, because of placenta praevia. Hayden had a late in-utero growth. With rest, we were able to ...

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RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.