Patients with rare and complex diseases can spend years without a clear diagnosis. It can be a frustrating and dispiriting experience for patients and their families. Many people living with these conditions are children whose development is severely affected as they move through the health system, sometimes seeing several specialists, in search of a diagnosis.
ERNs improve public and professional awareness of rare diseases and complicated presentations of illness, increasing the likelihood of early and accurate diagnosis and effective treatment where available. The networks are a platform for the development of guidelines, training and knowledge-sharing.
ERNs can facilitate large clinical studies to improve understanding of diseases and develop new drugs by gathering a large pool of patient data. For specialist health professionals, the ERNs are an opportunity for networking with like-minded experts from across Europe ending the professional isolation that many experts in rare diseases face.
Innovation in healthcare delivery is the cornerstone of the ERN system with the development of new care models, eHealth solutions and tools, and innovative medical solutions and devices, changing the way in which treatment itself is delivered. ERNs are incubators for the development of digital services for the provision of virtual healthcare.
ERNs will help to boost economies of scale and ensure a more efficient use of resources, with a positive impact on the sustainability of national healthcare systems. The networks are a visible demonstration of what solidarity can achieve in Europe.