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European Reference Networks - Publications (24)
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Rare diseases
Report on the state of the art of rare disease activities in Europe – 2014 edition (Part 1: Overview of rare disease activities in Europe)
The voice of the Rare Disease Patients: Experiences and expectations of over 3000 Patients on Rare Diseases Patient Registries in Europe – EURORDIS
The European Conference on Rare Diseases 2012 - Report – Executive Summary