Eurordis - Rare Disease Europe

This Patient Guide to the ERN Evaluation has been developed based on the ERN Evaluation Manual & Toolkit specifically to support patient representatives who are active in the ERNs to understand their role and contribution to the evaluation process of the Networks. The guide aims to empower patients to get involved in the evaluation process by breaking down the rational, process and supporting methodology of the AMEQUIS1 Evaluation.

The focus of patient representatives’ involvement in the evaluation will specifically give the patient’s perspective on four main elements:

a. Is the structure of patient involvement in the Networks enable meaningful contribution?

b. What has been the impact of patient involvement in the strategic discussion and operational activities of the Networks?

c. What has enabled meaningful involvement of patient representatives and what were the barriers?

d. Your reflections regarding the whole ERN system, in particular, the extent the Network has accomplished its objectives and what have been the achievements of the Network?

Please Note: The role of patients in the evaluation of individual HCPs members is outside the scope of this guide.