Rare diseases are those that affect no more than 5 in 10000 people. Taken together, between 5000 and 8000 rare diseases affect the daily lives of around 30 million people in the EU. Rare and complex diseases can cause chronic health problems and many of them are life-threatening.
One of the major challenges of rare and complex diseases is that specialist knowledge is scarce and fragmented, and therefore often unavailable in the patient’s region or country, making work on rare diseases an area of enormous EU-added value.
European Reference Networks (ERNs) have just celebrated the first year anniversary from their beginning of activity with the aim to tackle rare and complex conditions. Using the EU's great pool of knowledge and expertise, by connecting our assets through ERNs can bring concrete benefits to many thousands of patients.
During this first year of activity, the European Commission has developed the Clinical Patients Management System, an IT platform to review a patient’s diagnosis and treatment, exchange information and share knowledge, often by convening cross-border advisory boards in the framework of ERNs. In this way the medical knowledge that travels instead of the patients.
Vytenis Andriukaitis, European Commissioner for Health and Food Safety, has stated "In the coming year I would expect the ERNs to help hundreds if not thousands of patients, and in the longer term, I hope to see the ERN model extended to other diseases. As we reach a critical mass of patients being analysed, diagnosed and treated, ERNs, will boost research through large clinical studies and contribute to the sustainability of national healthcare systems. I am confident that ERNs will help and improve quality of life for many patients in the EU suffering from rare and/or complex diseases and conditions – children and adults alike." The full statement from the Commissioner on the first year anniversary of ERNs is available here.