Workshop on Rare Disease European Reference Networks

The workshop was held on 25-26 September 2012 in Newcastle-upon-Tyne, UK. It was organised through the EUCERD Joint Action (N° 2011 22 01) .


Workshop objectives:

This was conceived as a very practical, discussion-based workshop, bringing together a working group on the topic of RD ERNs which represented the numerous stakeholder groups in the RD field. The two-day event aimed to build upon previous work on this topic – against the backdrop of ongoing developments in EU healthcare – to establish how to ensure that ERNs unite the various components of RD healthcare to best meet the needs of RD patients. The scope of the issues under consideration was very broad: what should a rare disease ERN look like; what should be the core components; how might such ERNs be governed, funded and evaluated; how does all this intersect with ongoing work on the Cross Border Healthcare Directive? The debate had a very practical purpose – to reach a consensus on how to revise and elaborate a set of draft Recommendations on RD ERNs.



Workshop Report
Workshop executive summary