Flagship ERN article published
A flagship manuscript on the European Reference Networks (ERNs) was recently published in the Orphanet Journal of Rare Diseases. This paper provides an overview of the ERN ecosystem, including its structure, the activities the ERNs conduct, and how they hope to evolve.
Since their creation in 2017, the ERNs have played a critical role in improving and coordinating care for the approximately 30 million people living with a rare disease in Europe. Currently, there are 24 ERNs which connect 1,606 expert centres in 375 hospitals across all EU Member States and Norway. By facilitating knowledge exchange, guideline development and patient-centred governance, they have enabled the review of nearly 5,000 highly complex cases without requiring patients to travel abroad.
Following their establishment and consolidation, the next step for ERNs is their integration into national healthcare systems. To this end, in 2024 the European Commission launched the Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN). This three-year initiative, involving all EU Member States, Norway, and Ukraine, aims to strengthen the ERN infrastructure and put patients at the centre of care, while making the care pathway clear and easily accessible.
2026 Call for ERN affiliated partners now open
The European Commission has launched the 2026 Call for ERN affiliated partners. This call aims to improve geographical coverage of ERN expertise across Member States and Norway, and to facilitate access to specialised care in countries or disease areas where full ERN membership is not yet present. As such, the call is open to the following countries which do not yet have coverage across all ERNs, either as full members or affiliated partners: Bulgaria, Cyprus, Croatia, Czechia, Estonia, Greece, Ireland, Latvia, Norway, Poland, Portugal, Romania, Slovenia and Slovakia.
Affiliated partners are healthcare providers, designated at national level to collaborate with one or more ERNs. This enables official participation in ERN activities without the full requirements of membership. Healthcare providers in eligible countries who wish to formally join the ERN ecosystem are invited to apply for affiliated partnership through their National Competent Authorities by 1 September 2026. More information on the application process can be found on the Commission’s website.
ERN CRANIO: Survey on psychological services in craniofacial care
The ERN CRANIO is conducting a survey on the experiences of patients and parents impacted by craniofacial conditions, in order to inform the development of European recommendations for mental health care in craniofacial teams. Individuals living with a craniofacial condition, as well as parents of children with such a condition, are invited to share their input. The survey is available in 17 languages, is completely anonymous, and takes approximately 20 minutes to complete.
Recent articles and resources published by ERNs
Below, you will find a list of recent scientific articles, webinar recordings, and other resources published by various ERNs which may be of interest to our readers. More information about each resource can be found by following the hyperlinks provided.
