Rare disease expertise, centers and networks - Results of a public survey

This report presents the findings from the Public Survey on rare disease expertise, centers, and networks. The survey aimed to:

• Map expertise and centers dedicated to rare diseases and understand their key characteristics;

• Examine the criteria used for the recognition of rare disease centers;

• Explore existing collaboration between experts and between centers.

This study was led by Rare Diseases International. The survey was developed in collaboration with a small group of RDI members and experts.