ba0006is12 | (1) (1) | ICCBH2017
Sangiorgi Luca, on behalf of BOND ERN
Between 5000 and 8000 rare diseases affect the daily lives of around 30 million people in the EU. Many of those affected by a rare or complex conditions frequently undergo to late diagnosis and inadequate care and do not have access to high quality treatment. European reference networks (ERNs) for rare diseases should serve as research and knowledge centres, updating and contributing to the latest scientific findings, treating patients from other Member States and ensuring the...