ERNs: A flagship EU action for patients with rare diseases

In the European Union (EU) alone, up to 36 million people are living with one of the over 6,000 distinct rare diseases. Each rare disease, however, has a low prevalence. The definition of a rare disease in the EU is one that affects fewer than 1 person out of 2,000. Currently, there is no known cure for 95% of rare diseases.
Having a rare disease may mean that you have a condition your doctor or other healthcare professional cannot identify. It may mean that your symptoms are misdiagnosed – sometimes for years – while you suffer and watch your condition worsen. Having a rare disease often means not knowing what is wrong with you, or what to do about it to ease your pain and discomfort. It can be frustrating and lonely. It can feel hopeless.

The EU stands with rare disease patients and is bringing EU-added value by pooling our resources, sharing knowledge and working together. The European Commission has supported numerous actions in the field of public health and healthcare systems to help Member States develop national responses, strategies and plans. These include the very successful European Reference Networks (ERNs) which were set up in 2017 to pool knowledge and resources to tackle rare and complex diseases, also in medical domains where expertise is rare.

ERNs as virtual networks connect healthcare providers, professionals and patient organizations across the EU and Norway. Based on the EU Directive on Cross Border Health Care, the ERNs represent one of the greatest achievements of the rare disease community in Europe and have become an inspiration  for global action, thanks to the efforts of the healthcare providers, patients’organizations, the European Commission and the EU Member States.
No country alone has the knowledge and capacity to treat all rare and complex conditions. Thanks to the ERNs, patients across  the EU have access to the best expertise available. Through these networks, the experts reach the patient, without the patient having to travel to experts who may be located far away.

The EU connects the dots, maximizing synergies between Member States and encouraging the sharing of knowledge and resources. The final aim is to help patients get the accurate diagnosis they need, make sure they have treatment and care that will help miniamize discomfort and help them live as fully as possible, and lastly work together to find cures.

Together we can offer rare disease patients a better future.

More details about this latest news can be found here, details about the ERNs can be found here, while additional contents on Public Health from the European Commission can be read here.

The newest brochure on the ERNs is available, here is also the pdf version ready to be downloaded for free: 2023_ERNs_Booklet_en

Half a million people in Europe are diagnosed with a rare disease every year.
No country can meet this challenge alone.
ERNs are virtual networks that bring together experts from across the EU and EEA.
Together, they tackle rare, low-prevalence and complex diseases by improving diagnosis and access to specialist care.
Share. Care. Cure.