RARE-Bestpractices aims to ensure that rare disease patients benefit from current knowledge of best practices in the diagnosis and management of their condition. The project will do this by creating a platform where this knowledge can be shared globally.   Two databases are in development: one …

Dedicated to rare diseases, the IT infrastructure will consist of a publicly available website, two database applications and a forum based Web Community. The website, launched in 2013, provides the community with information about the project and related advancements. Development of the …

Healthcare guideline development is usually driven by national healthcare organisations and professional associations and mainly focused on the management of common conditions. However, in order to have recommendations to support decisions for the management of rare diseases, patient organisations …