International Niemann–Pick Disease Alliance

Useful Links

Other Organisations

As well as our members, there are groups and organisations all over the world working in the field of NPD. We list the ones we know about here. It’s not an exhaustive list and we’ll be adding to it shortly.

If you’re not on this list, please do get in touch – we’d like to pull together a full picture of the global efforts that are ongoing towards supporting those affected by all types of NPD.

In the USA:

In the UK:

In Australia:

In Japan:

In Brazil:

Rare Disease Umbrella Groups

There may not be a Niemann Pick specific support group in your country. The following links are for umbrella groups that provide support to people with Lysosomal Storage Disorders or with rare diseases in general.





Further information on NPD

This website has been developed by Actelion Pharmaceuticals Ltd as an educational resource for healthcare providers and interested parties, and provides further information on NP-C.


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...