(Coordinator: Domenica Taruscio, Rome, Italy): a platform for sharing best practices for management of rare diseases.
Submitted under: HEALTH.2012.2.4.4-3: Best practice and knowledge sharing in the clinical management of rare diseases
The aim of Rare-Bestpractices is to improve clinical management of RD patients and narrow the existing gap in quality of health care among EU member states as well as in other countries, by collecting, evaluating and disseminating best practice recommendations and sharing knowledge globally.
Rare-Bestpractices will develop a sustainable global networking platform, supporting the collection of standardized and validated data and the exchange of knowledge and reliable information among 14 countries. This project fosters synergistic collaboration among experts, patient representatives, agencies, institutions, networks and organizations experienced in best practice guidelines development, at a regional, national and international level.
Project length – 4 years
Project award – up to €3million