On the occasion of Rare Disease Day 2018, the European Reference Networks (ERNs) for rare diseases celebrated their first anniversary. Within the past year, the impact of the ERNs on the quality of life of rare disease patients in Europe was highlighted in an articleby the European Commissioner for Health and Food Safety, Dr. Vytenis Andriukaitis.
The ERNs are unique and innovative cross-border cooperation platforms linking specialists for the diagnosis and treatment of rare or low prevalence complex diseases. Since their launch, the ERNs have treated more than 50 patients. Since collaboration is key to expanding knowledge and expertise, Dr. Andriukaitis expects the ERNs “to help hundreds if not thousands of patients” in the coming years. The ERNs are now reaching a critical mass of patients analyzed, diagnosed, and treated, thus enabling the acceleration of research, patient participation in large clinical trials, and increased sustainability of the healthcare system. In the future, if the ERN-model continues to be proven successful, Dr. Vytenis Andriukaitis suggests that expansion into other diseases might be attractive.