Background <p>Individuals affected by rare diseases often describe the path to diagnosis as an odyssey, and even after diagnosis, there is a&#xa0;need for improvement in the subsequent care. Registries represent one of many building blocks for improving healthcare and research.</p> Objectives <p>What can registries achieve in the field of rare diseases, and what kind of challenges arise?</p> Methods <p>This article demonstrates what registries can achieve in the field of rare diseases with concrete examples and provides insights into the technical basics, as well as the topics of ethics and data protection, based on current literature.</p> Results <p>Multicentric data collection in registries is especially important in the field of rare diseases due to the small number of cases. However, this presents particular challenges regarding technical implementation, data protection aspects and financial resources.</p> Conclusion <p>Registries are an important tool for improving the care of individuals affected by rare diseases. However, a&#xa0;simplification and standardisation of the framework conditions would be desirable.</p>