Who We Are

Patients are at the heart of the INPDR and working hard behind the scenes are a team passionate about achieving our objectives, as well as a determined and global network of experts and advocates.

The International Niemann-Pick Disease Registry (INPDR) is a not-for-profit limited company and registered charity. We are governed by Articles of Association and Memorandum and run by an independent Board of Trustees who are responsible for overseeing the future direction and development of the INPDR. On a day to day basis, the Registry Management Team is responsible for implementing strategy, ensuring compliance and responding to enquiries, including data requests. The Scientific Advisory Committee (SAC) is made up of a panel of experts who advise the Registry Management Team on scientific and clinical matters and consider research requests and provide guidance to the Board of Trustees.