International Niemann–Pick Disease Alliance

IMPORTANT: The Data Protection Law is Changing!

Due to changes in data protection legislation, soon the International Niemann-Pick Disease Alliance (INPDA) won’t be able to contact you about any of our services or activities unless you explicitly give your consent.

In other words, if you would like to continue to use our services, receive our updates and information about our services, research and clinical trials, our events, details of fundraising activities or other items relevant to our work, we will need your explicit permission to keep in touch with you. Even if you have previously told us how you would like to hear from us and/or you have supported us for many years, new data protection legislation requires you to provide your explicit consent in order for us to continue to contact you in the ways that are important to you.

For further information, please read our Information Leaflet below:

INPDA – Data Protection Law is Changing

To tell us your preferences, please complete and return the form below as soon as possible:

INPDA – How Do You Want To Hear From Us – Form

If you want to talk through the changes with us, please don’t hesitate to either email us at: ning.lu@inpda.org, or call us on: 0191 415 0693. You can also find out more about the change on the UK Government website, here.

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...

Think Again. Think NP-C

Join our international campaign to improve diagnosis of NP-C!