To document the Niemann-Pick patient experience to advance research and improve health outcomes.
Focus on the creation and ongoing development of a comprehensive, international data resource, specific to Niemann-Pick disease which benefits patients by increasing understanding of these rare conditions, encouraging efficient and timely diagnosis, enabling progress in research and clinical trials, and facilitating the development of therapeutic interventions.
We can only achieve our vision with the support of our stakeholders, especially patients who share their data with the expectation that it is handled safely and used responsibly.
We shall respect and protect patient privacy and build trust among our patient community.
We will strive for a quality of excellence through continuous improvement, professionalism and expert support.
We operate with the highest levels of scientific integrity and promote high-quality research.
We will be transparent in communications and hold accountability for our actions and decisions.
We will foster and promote an environment of collaboration to improve outcomes in Niemann-Pick disease.
We will 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 disease