CDH UK is very proud to be a founding member of ERNICA which is just one of many European Reference Networks (ERNs). ERNICA was established in 2016 for Inherited and Rare Congenital Anomalies, which includes CDH. We are also a member of the ERNICA Advisory Board and the Scientific Committee. Being a part of this network means that we work as the patient voice for CDH and we also work closely with other conditions (and their respective patient representatives) that are covered by this particular network, which means that we can collaborate and learn from each other for better patient care and support. We are committed to improving outcomes for patients in the UK and across the globe and so our work with ERNICA is very important and a huge part of our global vision to provide better care and support for patients no matter where they live.
Here is a short explainer video from the EC website about European Reference Networks and how they work.