European Reference Networks are Networks for Rare Diseases that bring together the best expertise on RDs in the Europe Union Member States (EU MSs) and Norway. They work towards achieving equal access for diagnosis, management and treatment for Rare Disease patients across the EU MSs and Norway. The ERNs through the European Commission (EC), provide a virtual platform for discussing patients with difficult and complex rare conditions, amongst high level expert Members from various centres of expertise across Europe. Mater Dei Hospital is designated as a National Coordination Hub, Affiliated Partner within the ERNs with cooperation agreements with all the 24 European Reference Networks for Rare Diseases. The implementation of the 24 agreements with the ERNs started in May 2021. MDH consultants can access EU-wide expertise on rare diseases by requesting a consultation through a dedicated online clinical platform that is GDPR compliant and specifically designed for this purpose by the EU. The cross-border system of referral is used for these cases and to date we have had several cases uploaded and discussed using this dedicated clinical platform.

While patients have direct Access to all 24 Networks this service is Consultant-led and therefore referral with experts through the online platform is through the Consultant in charge of the patient.

1. Consultations are initiated by the patient’s consultant at Mater Dei Hospital. Patient consent is always required to proceed with referral to these networks and a system kicks off through the treatment abroad committee for approval. Referrals are anonymised accordingly to ensure conformity with data protection legislation.
2. Patients also have the right to directly contact the ERNs, whereby the ERNs contact the coordination set up at Mater Dei Hospital and each case is dealt with accordingly,.