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

Our little fighter

by LoveUHayden published 3 months ago
2 comments

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 ...

Critically ill and nevertheless in the prime of life

by oetterlim published 5 months ago
5 comments

Our six year old Mael sits on the floor in the house and plays. Together with its four-year-old brother Lian, he feeds animals in the Playmobil zoo...

Partners and Patient Groups

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.