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Today in Vilnius, the European Commission and the Maltese Presidency of the Council are delighted to welcome more than 600 participants to a two-day conference, hosted by the Ministry of Health of Lithuania, to celebrate the approval of the first 24 European Reference Networks (ERN) in the EU. Two thirds of today's participants are ERN coordinators and members. These highly specialised healthcare providers are the pioneers of this new European adventure, and we congratulate them on the work they have done to pull together so many healthcare providers across Europe.
Over 6 000 rare diseases affect the daily lives of around 30 million people in the EU. No country alone has the knowledge and capacity to diagnose and treat all rare and complex diseases, but by cooperating and exchanging life-saving knowledge at European level through ERNs, patients across the EU will have access to the best expertise available.
The 24 approved ERNs – all of whom are represented here today - cover 24 clinical areas and bring together more than 313 hospitals and almost 1000 healthcare units of expertise across 25 EU countries and Norway. They involve thousands of players - health professionals, patients, healthcare providers, researchers.
This conference serves a practical as well as a celebratory purpose. The 24 ERNs have to tackle many complex tasks in the coming months to become fully operational. For example, they need to bring together different areas of expertise, break down professional silos, raise awareness and secure sustainable financing. A key concept of this initiative is that the information travels rather than the patient, so ERNS must have the capacity to use IT, telemedicine and e-health tools. Addressing such operational steps is essential groundwork for the future success of ERNs.
A large degree of political commitment is crucial for the smooth implementation of the Networks. At the European Commission-level every effort is being made to ensure that ERNs can reach their potential, expand, and open up opportunities for clinical development and data and knowledge generation.
European cooperation in highly specialised health services is a priority of the Maltese EU Presidency of the Council, and Malta is setting up a national coordination hub for ERNs. The Presidency strongly believes that EU Member States can obtain added value through the European Reference Networks as they lay out a meaningful platform for sustainable structured cooperation. This is particularly valuable in the area of rare diseases and highly specialised health services.
The Presidency sees European Reference Networks as playing a crucial role in enhancing further the health workforce capacity through the provision of training in highly specialised health services. The focus of the Maltese EU Presidency of the Council will continue to further support such models for voluntary structured cooperation that are essentially anchored into national centres of expertise to deliver excellence in diagnostics and care. Voluntary structured cooperation between health systems enhance efficiency and sustainability of individual health systems whilst also promote opportunities for equitable access to specialised technologies, medicines and services for EU citizens irrespective of where they reside.
Expectations are very high on what ERNs will achieve, and we have every confidence that such expectations can be met. The practical implementation starts now, but the benefits to rare diseases patients across Europe will be the true measure of its success. We need to work together towards this goal – national authorities, healthcare providers, health professionals, patients and researchers. Together we can transform this bold initiative into an outstanding success that will transform the lives of rare diseases patients across Europe.
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