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Health-EU Newsletter 190 - Focus

"Thousands of patients will benefit" from European Reference Networks

On 1 March, 2017, 24 thematic European Reference Networks began working, gathering together over 900 highly specialised healthcare units from 26 countries. 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.

What inspired the creation of the European Reference Networks?

We often hear tragic stories from patients with rare or complex, life-threatening diseases who can't get an accurate diagnosis or the right treatment, often with irreversible consequences. Doctors often lack information about rare or complex diseases and lack opportunities to network with rare disease specialists. Yet as with so many other situations, collaboration is the key - the expertise needed might be right next door or available in another EU country. We need to bring people together, to give patients and doctors access to the expertise of specialists from across Europe through the European Reference Networks.

How can ERNs improve the lives of Europeans?

Patients with rare and complex conditions will be able to benefit from the best treatment and advice available 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 will work together in 24 thematic networks, ranging from childhood cancer to immunodeficiency. This will improve diagnosis and treatment and help provide affordable, high-quality and cost-effective healthcare.

What is the added value of EU-level collaboration in this area?

With knowledge and resources on specific rare conditions scattered across individual countries, the EU can connect the dots, bringing together expertise and maximising synergies between Member States.

What else is being done to tackle rare and complex diseases?

The ERNs are part of a broader strategy to make the European health systems more efficient, accessible and resilient. The European Commission supports Member States by pooling knowledge and expertise, registries and data, and by funding research and innovation, projects and joint actions. We also give incentives to manufacturers to develop orphan medicines and bring them to market.

What is your hope for the future of ERNs?

No one country has the knowledge and capacity to treat all rare and complex conditions, but by exchanging life-saving knowledge at EU-level through ERNs, we can ensure that patients across the EU will have access to the best expertise available. And that means that tens of thousands of people will have the chance to live longer and healthier lives.

Activities at EU level

European Reference Networks

European Commission - Health and Food Safety


Health Commissioner Vytenis Andriukaitis explains 'Europe's Plan to fight Rare Diseases'

On Rare Disease Day, 28 February, Commissioner Andriukaitis spoke with the Financial Times in this on-line video interview about the creation of EU-wide healthcare networks, the European Reference Networks.

900 medical teams connect across Europe for the benefit of patients

On 1 March the newly established European Reference Networks (ERNs) began their work, serving as cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases.

What are European Reference Networks and how do they work?

Find the answers to these and other questions in a brand new Question and Answers memo on the European Reference Networks.

New video shows the impact of the European Reference Networks

See for yourself how the European Reference Networks can make a difference in the lives of Rare Disease patients! The motto says it all - share, care and cure.

European Reference Networks discussed at European Patient Rights and Cross-Border Healthcare conference

The 1 March conference hosted by this European Parliament Interest Group focused on 'Exploring areas and benefits of cooperation in cross-border healthcare to protect patients' rights'.

Rare Disease Day 2017 video: With research, possibilities are limitless!

The video highlights the struggle that rare disease patients face and the importance of continued research.

Health Programme Projects

Eurodis - European Organisation for Rare Diseases

Orphanet - Development of the European portal of rare diseases and orphan drugs

EUCERD – EU Committee of Experts on Rare Diseases

EPIRARE - Building Consensus and Synergies for the EU Registration of Rare Disease Patients