We’re proud to be featured as a charity partner in Rare Revolution Magazine, and to take this opportunity to introduce the International Niemann-Pick Disease Registry (INPDR).

The INPDR is a disease-specific patient registry created by the Niemann-Pick community for the Niemann-Pick community. It was developed to benefit not only patients and families, but also clinicians, researchers and other key stakeholders working to improve the lives of those affected by Niemann-Pick disease. We document the Niemann-Pick patient experience to advance research and improve lives.

Our journey began in 2011, when a proposal for a global registry was agreed upon by a consortium of patients, clinicians and researchers. In the following year, grant funding provided by the European Commission and the registry consortium was secured to enable registry development to commence. Since then, the INPDR has grown into a powerful, collaborative platform with active sites across North America, South America, Europe, Australia and Asia.

It stands as a testament to what can be achieved when a rare disease community unites behind a shared vision.

The Mission of the INPDR is to document the Niemann-Pick patient experience to advance research and improve health outcomes, with a vision of a comprehensive, international data resource specific to Niemann-Pick disease for everyone, which informs clinical care and supports research. The data we gather can contribute to earlier diagnosis, better clinical management and the acceleration of potential treatments—helping to shape a brighter future for all those affected by Niemann-Pick diseases.

We all want to see people with Niemann-Pick disease living full and positive lives. As a family with experience of the disease, you play such an important role.

By contributing your experience to our patient reported database, you will support clinical research and provide real-world evidence to determine the efficacy of therapeutics. In the process, you’ll be helping us create real, positive change.

We’re grateful to Rare Revolution Magazine for supporting the work of rare disease communities around the world and for giving a platform to voices that need to be heard.

To learn more about the INPDR, please visit https://inpdr.org

---