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What is the INPDR?

Mission, vision and principles

Our mission

To document the Niemann-Pick patient experience to advance research and improve health outcomes.

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Our vision

A comprehensive, international data resource specific to Niemann-Pick diseases. One that increases understanding of these rare conditions, encourages efficient and timely diagnosis, enables progress in research and clinical trials, and facilitates the development of therapeutic interventions.

Our principles

  • We respect and protect patient privacy, and build trust among our patient community.
  • We strive for excellence through continuous improvement, professionalism and expert support.
  • We operate to the highest levels of scientific integrity and promote high-quality research.
  • We are transparent in communications and take responsibility for our actions and decisions.
  • We foster an environment of collaboration to improve outcomes in Niemann-Pick diseases.
  • We embrace innovation and change as appropriate to our needs.
  • We shall remain independent of advocacy, policy and commercial interests and let the data tell the story of Niemann-Pick diseases.