The Hospital Clínic de Barcelona is already a member of 11 of the existing 24 European Reference Networks. In 2016, the European Commission took the initiative to create European reference networks for rare diseases, the European Reference Networks (ERNs), in order to provide excellent diagnostic and therapeutic management for patients with rare diseases through platforms that share clinical information. Via these international platforms, the healthcare professionals with expertise in rare diseases in each ERN discuss complex clinical cases to help achieve higher quality in diagnostic procedures and in the treatment of patients.
Rare diseases are those that affect fewer than 5 people in 10,000 in the European Union. Since they affect few people, they are less likely to be studied and fewer resources are devoted to them. There are many rare diseases and they all affect the quality of life of many people, patients and also families. Therefore, the creation of national and international networks of centres and professionals with expertise in these diseases can help increase our knowledge and improve the care for the patients suffering from them.
All the accredited centres in the ERNs were first recognized, and are already operating as reference centres for the governments of each country. In Spain, this has been carried out through the achievement of the “Reference Centres, Services and Units” (“Centros, Servicios y Unidades de Referencia, CSUR”) accreditation from the Ministry of Health. Therefore, apart from creating links between health centres and professionals highly specialized in these diseases, the aim is to promote research into the causes and mechanisms of these orphan diseases, promote research into new potential treatments, and thus, to try to improve the prognosis and the quality of life of patients with rare diseases and also their families.
The Medical Management of the Hospital Clínic de Barcelona, through the Quality Management and the Hospital Clínic Programme for Rare Diseases, has provided logistical and strategic support to ensure qualified professionals can have their working groups or units accredited as members of the different ERNs. At the Hospital Clínic, the areas already achieved in the 2016 call for applications were rare liver, lung, skin, neurological and epileptic diseases; and in the recent call in 2021, the areas of paediatric transplantation and rare heart, kidney, eye and immune system diseases were added.
The 11 ERNs the Hospital Clínic de Barcelona forms part of and their coordinators are:
- ERKNet (kidney diseases): Joint ERN with the Hospital Sant Joan de Déu, the adult part coordinated by Dr. Luis Quintana, Nephrology Service.
- ERN EpiCARE (epilepsies): ERN coordinated by Dr. Mar Carreño, Neurology Service.
- ERN EYE (eye diseases): ERN coordinated by Dr. Bernardo Sánchez-Dalmau, Ophthalmology Service.
- ERN GUARD-Heart (heart diseases): ERN coordinated by Dr. Elena Arbelo, Cardiology Service.
- ERN LUNG (rare respiratory diseases): ERN coordinated by Dr. Joan Albert Barberà, Pulmonology Service.
- ERN RARE-LIVER (liver diseases): ERN coordinated by Dr. Joan Carles García-Pagán, Hepatology Service.
- ERN ReCONNET (Rare and Complex Connective Tissue and Musculoskeletal Diseases): Joint ERN with the Hospital Sant Joan de Déu, coordinated by Dr. Ricard Cervera, Autoimmune Disease Service.
- ERN RITA (immunodeficiency, autoinflammatory diseases, vasculitis, rheumatic diseases, paediatric rheumatology and autoimmune encephalitis): Joint ERN with the Hospital Sant Joan de Déu, the adult part coordinated by Dr. José Hernández-Rodríguez, Autoimmune Disease Service.
- ERN-RND (neurological diseases): Joint ERN with the Hospital Sant Joan de Déu, coordinated by Dr. Maria Josep Martí, Neurology Service.
- ERN Skin (skin diseases): Joint ERN with the Hospital Sant Joan de Déu, the adult part coordinated by Dr. Josep Riera, Dermatology Service.
- ERN TRANSPLANT-CHILD (transplantation in children): Joint ERN with the Hospital Sant Joan de Déu, the adult part coordinated by Dr. Fritz Diekmann, Nephrology and Kidney Transplant Service.