The European Reference Networks (ERNs) bring together highly specialised healthcare providers for rare and undiagnosed diseases within the European Union.
After a long application and reviewing process, 24 ERNs were launched in March 2017. Each ERN consists of Europe-based health care providers from specific medical fields. The concentration of knowledge and resources will bring a huge benefit to rare disease patients.
Among them is the ERN-Skin for rare, complex and undiagnosed skin diseases, lead by Prof. Christine Bodemer. It comprises 56 centres of expertise from 18 countries, and will initially focus on eight thematic groups including Epidermolysis Bullosa. Find all details about the ERN-Skin on www.ern-skin.eu
EURORDIS, the voice of rare disease patients in Europe, plays a key role within the network through the establishment of European Patient Advocacy Groups (ePAGs) for each ERN. Thus, the patients voice is heard in the development, programming and evaluation of ERN initiatives and activities.