The Coordination Office meeting of the European Reference Network (ERN) for Rare Metabolic Diseases (MetabERN) – coordinated by Professor Maurizio Scarpa, Coordinator of the European Network and Director of the Regional Coordination Centre for Rare Diseases of the Azienda Sanitaria Universitaria Integrata of Udine – was held in Brussels on Wednesday 24 November.
The Brussels Liaison Office of the Autonomous Region of Friuli Venezia Giulia kindly hosted the meeting, providing its premises and the possibility of remote connection for participants unable to attend.
The agenda of the meeting focussed on the activities carried out during the first 5 years of work and the next strategic steps and priorities of MetabERN for the upcoming years. During the meeting, particular attention was given to topics such as newborn screening for metabolic diseases, the collection of existing guidelines for patient care, the design of dissemination, education and training programmes for metabolic diseases, the use of the European platform CPMS for virtual consultation and future projects in which MetabERN will actively participate with the aim of developing innovative research tools to improve the quality of life of patients with rare metabolic diseases and their families.
MetabERN brings together 78 hospitals and 41 patient associations in 23 European countries and is continuously expanding. Such synergy and coverage allow the network to address the care of patients with rare metabolic diseases with a multidisciplinary approach, ensuring coordinated action and wider collaboration at the European level between physicians and patient associations. Rare metabolic diseases are in fact conditions that require a particular deployment of resources and expertise. For this reason, MetabERN aims to promote knowledge sharing, training and medical research to ensure efficient care that can improve prevention, early diagnosis and treatment of these diseases across Europe.
On behalf of MetabERN\’s Coordination Office, a special thanks goes to Dr Raffella Viviani and Dr Luisa Poclen, Coordinators of the Brussels Liaison Office and of the FVG Region, who support MetabERN\’s activities by facilitating relations and improving dialogue with the European Institutions, promoting inclusion in working groups created by the European Commission, and identifying collaborative projects useful also for the FVG Region.
