Vytenis Andriukaitis, European Commissioner for Health and Food Safety, says the value of EU collaboration is particularly clear in the case of rare and complex diseases.
We often hear tragic stories of patients with rare or complex, life-threatening diseases, who face challenges in obtaining a correct diagnosis and in accessing appropriate therapies and clinical expertise. Their doctors are unable to help them as they have never seen similar cases, so they are left untreated or have to scour the internet in the hope of finding a centre with the necessary expertise.
With ERNs, patients with rare and complex conditions will be able to benefit from the best treatment and advice available in the EU for their specific condition. Their doctors will have access to a highly specialised pool of colleagues from all over Europe. In the first phase, over 900 healthcare units from nearly all EU Member States will work together in 24 thematic networks. They will cover a wide range of conditions, from bone disorders to blood diseases, from childhood cancer to immunodeficiency. They will facilitate access to diagnosis, treatment and provision of affordable, high-quality and cost-effective healthcare.
With knowledge and resources on specific rare conditions scattered across individual countries, the EU can provide significant added value by connecting the dots, bringing together expertise and maximising synergies between Member States. No country alone has the knowledge and capacity to treat all rare and complex conditions, 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 driving forces behind the ERNs are healthcare providers and national health authorities. They show trust, take ownership and have the most active role in the development and functioning of the networks. The Commission’s role, as defined in the 2011 EU Directive on Patients’ Rights in Crossborder Healthcare, is to create the framework for the ERNs. The Commission also provides grants to support network coordinators and provides them with the technical networking facilities.
The ERNs are part of a broader strategy to make the national and European health systems more efficient, accessible and resilient. The European Commission supports Member States by pooling knowledge and expertise, registries, data and funding. We support research and innovation, and fund projects and joint actions. We give incentives to manufacturers to develop orphan medicines and bring them to market.
I hope that ERNs will provide concrete results for tens of thousands of rare disease patients so that they are no longer looking for answers in the dark, and can benefit from the best expertise available in Europe so they may live longer and healthier lives.