Dec 31, 2025
Workshops hosted by the European Commission at national level focusing on patients’ rights in cross-border healthcare and European Reference Networks.
In the context of enhancing the implementation of Directive 2011/24/EU on patients’ rights in cross-border healthcare (CBHC), the Commission is organising a series of 10 workshops at national level focusing on patients’ rights in cross-border healthcare and European Reference Networks (ERNs). The workshops will culminate in 2025 in an EU-level event. Ad hoc communication materials are also being prepared to support these events. The location of the workshops is a result of the interest expressed by the EU Member States.
The objective of the action is to raise awareness about patients’ rights and improve information on cross border healthcare, thus facilitating the implementation of the Directive 2011/24/EU, including the European Reference Networks (ERNs), and their activities for patients affected by a rare disease.
The first national workshop was organised by the Maltese Ministry for Health and Active Ageing in collaboration with the European Commission and took place in Valletta (Malta) on 29th February 2024 in occasion of the rare diseases day. The workshop audience was composed by different stakeholders’ groups, such as healthcare professionals, healthcare providers, health insurance, local administrations and patients’ organisations. Approximately 140 participants were present on site and about 300 people joined the workshop online. The workshop was opened by Jo Etienne Abela, Malta’s Minister for Health and Active Aging and by the European Commission. Sandra Gallina, the Commission’s Director General for Health and Food Safety (DG Sante) sent a video welcome message. The workshops had two main plenary sessions on cross-border Healthcare and the European Reference Networks for rare diseases and many testimonials of rare disease patients who stimulated debate and discussion. The afternoon was dedicated to three parallel sessions on patients’ rights and rare diseases; ERNs and Rare Diseases Registries and cross-border healthcare and eHealth.
The conclusion of the workshop stressed the invaluable role of the ERNs and the cross-border health care options in bridging the gap for people with rare diseases. The financial burden faced by many patients and the complexity of national health care system and insurance policies were also emphasised. Finally, the workshop reaffirmed the necessity to continue investing in the European Reference Networks and their integration into national health systems.
