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What is the INPDR?

Who we are

The INPDR is a wonderful example of what can be achieved when multiple cross-sector stakeholders work together:

Board of trustees

The INPDR is overseen by our board of trustees, who are responsible for INPDR’s strategic direction and overall governance.

Registry Management Team

Our Registry Management Team oversees the day-to-day running of the registry and the implementation of our strategic plan. This includes the IT platform, data management, site operations, regulatory compliance, recruitment and communications.

Ambassador Programme

We have recently introduced a Community Ambassador Programme to support and illustrate the global nature of the INPDR. Community Ambassadors play a vital role in raising awareness and encouraging engagement with the registry, both in their own countries and internationally. To find out more, please contact us.

Stakeholder Working Group & subgroups

Our Stakeholder Working Group is actively involved in supporting the development of the INPDR. It’s made up of patient advocates, clinicians, researchers and industry representatives, and is led by members of the Registry Management Team.

Scientific Advisory Committee (SAC)

Our Scientific Advisory Committee (SAC) includes international clinicians and researchers who have knowledge and expertise in Niemann-Pick diseases, together with representatives of the patient community and industry.

The SAC works alongside our board of trustees and Registry Management Team to offer advice on scientific, ethical and clinical matters. It also considers data requests and related research proposals, and contributes to the ongoing development of the INPDR.

The International Niemann-Pick Disease Alliance (INPDA)

The INPDA is a global network of non-profit organisations working in the field of Niemann-Pick disease (NPD). It provides a forum for the sharing of information and experiences related to all aspects of Niemann-Pick diseases.

The collaboration and support of the INPDA, its partner organisations and professional patient networks has been critical to the ongoing development of the INPDR.

To find out more about the INPDA, Niemann-Pick diseases or to locate your nearest patient support group, visit the INPDA website.

Please note, our stakeholder engagement is not limited to the above! We always welcome views, advice, support and information from individuals and organisations across the Niemann-Pick community. If you would like to share a comment or feedback, contact us here.