The success of the LSD Collaborative inspired Niemann-Pick UK (NP-UK), one of the charities involved in the Collaborative, to collaborate with other patient organisations across the world. In 2009, NPUK set up the International Niemann-Pick Disease (NPD) Alliance, a global network of organisations consisting of 22 patient groups across 17 countries. This international collaboration provides a forum for patient communities and professionals to support patients and families affected by NPD.
The Alliance agreed on an overall mission statement: to relieve sickness and distress amongst families affected by NPD worldwide. The collaboration currently focuses on three key areas:
- Providing mutual support between patient organisations by sharing knowledge, resources, and skills, as well as encouraging NPD patient groups to form in countries where they do not exist.
- Sharing accurate information on clinical trials and increasing awareness and diagnosis of NPD type C.
- Encouraging research with stakeholders and maintaining the International NPD Registry. This Registry was formed by the Alliance and collects clinically- and patient-reported data globally from over 300 patients with NPD, in order to improve understanding and clinical management of the disease.
This unifying international initiative was much needed and appreciated by patients and clinicians throughout the NPD community.