The European Commission has organised European Reference Networks (ERNs), aimed at tackling complex or rare diseases and conditions that require highly specialised treatment and resources by connecting healthcare professionals across EU Member States and thereby improving access to diagnosis, treatment and provision of high quality healthcare for patients with rare diseases or conditions that require a concentration of resources, expertise and knowledge.
An ERN on respiratory diseases including fILDs was launched in March 2017: the ERN-LUNG. The ERN-LUNG covers a wide range of rare lung diseases, including Pulmonary Fibrosis. EU-PFF works together with ERN-LUNG as an ePAG – an elected patient representative who will ensure that the patient voice is heard throughout the ERN development process. The aim is to ensure that PF diagnosis, care and treatment options are standardised across Europe, and to improve patients’ quality of life.