Following a suggestion from the Ombudsman, the European Commission has created a complaint mechanism through which people can raise concerns about the activities and functioning of European Reference Networks (ERNs)—virtual networks that help patients with complex or rare diseases by facilitating discussions between healthcare providers from across Europe.

The complaint review process was determined with the input of the ERNs themselves as well as the Board of Member States that oversees them.  Each ERN is now responsible for ensuring it handles complaints in line with this process.

The move to create a complaint mechanism follows an Ombudsman inquiry into how the Commission handled concerns about guidelines developed by an ERN for Pierre Robin sequence—a rare condition affecting a baby’s jaw and mouth.