Currently working as Chair of the 24 coordinators of the European Reference Networks (ERNs) and ERN Coordinator of ERN-CRANIO on Rare Craniofacial Anomalies, involving 29 European hospitals, Irene M.J. Mathijssen is a professor by background who specialised in craniofacial anomalies and published over 140 peer-reviewed papers. Since Dec. 2016, she has served as Head of the department of Plastic, Reconstructive and Hand Surgery at Erasmus University Medical Center (Erasmus MC) in Rotterdam, Netherlands. Irene is also the Secretary-Treasurer of the International Society of Craniofacial Surgery (ISCFS) from 2013 to present, and President committee for development of national guideline on craniosynostosis in 2008, 2010 and currently. Before Joining the ERNs in 2016, Irene worked for 7 years as President at the Dutch Society for Plastic Surgery from 2006 to 2012.

Could you summarise what are the responsibilities of the ERN Coordinators that you are representing?

The Chair of the coordinators is elected from among the coordinators and co-chairs the meetings of the coordinators with a representative of the European Commission. The coordinators are responsible for the governmental and financial part, and the monitoring of outcomes, of the networks. They initiate several working groups within their ERN that deal with care and research for the involved rare diseases, stimulate research to improve care and reach out to patients and patient advocacy groups to contribute to the ERN goals. Next to these tasks, the coordinators strive for an inclusive policy and attempt to get representatives from every Member State within Europe. Given the complexity of most of the rare diseases, interaction between the ERNs for overlapping diseases is now on the agenda.

What are the big achievements of the ERNs you would like to point out after their first two years of activity?

The development of ERN guidelines on specific diseases is a major achievement, as these guidelines indicate what the standard of care should be. This helps patients throughout Europe in informing them what is needed and at which time, and it helps care providers in raising the bar for quality of care. Usually, a guideline also outlines what indicators should be collected to monitor the quality of care and this opens up the option to compare different centres and identify best practices.

On the educational part, successful webinars are offered that are frequently visited by care providers from within and outside Europe. Each ERN has its own website that helps inform patients.

The Clinical Patient Management System (CPMS) is a web-based tool that allows health care providers to ask for advice from the experts on diagnosis and treatment. By providing a report at the end of a consultation, the health care provider can offer this report to his or her patient.

What are the main challenges and needs ahead that ERNs are facing and you would like to mention?

The main challenges that the coordinators and project managers are dealing with is a vast amount of administrative load to deal with the numerous grant applications, the reporting on these grants, coping with the new applications for affiliated partners and full members, while also wanting to achieve the goals that each ERN has set out for their patients. A lot has been achieve in only 2 years’ time given the dedication of all involved participants, including the European Commission and Board of Member States. It will be a challenge to keep this high level of energy going with the limited resources there are. The expansion of involved clinical centres that is now ongoing will be another major process that will take up a lot of time to get these centres all integrated and have them actively participating. Next, the sustainability of the ERNs, after the first 5 years in March 2022 will be a hot topic.