EURORDIS workshop on good clinical practice in the context of ERNs

This workshop was help during in May 2016. Presentations and report here, including on:

best practice guidelines in the context of rare disease European Reference Networks

tools developed by the RARE-Bestpractices project to collect best practices guidelines and research recommendations

methodology to appraise clinical guidelines for rare diseases

the power of networks in clinical practice guideline development

patient involvement in the development of rare disease standards of care in the Netherlands

principles for the engagement of people living with a rare disease in translational activities