The third international meeting of the Scandinavian Association for Glycogen Storage Disease focused on hepatic glycogen storage disease and was organized for health-care professionals, patient representatives, and representatives from the industry. This report highlights dilemmas in dietary management, differences in monitoring strategies, and challenges with rare disease care, research, and patient participation. http://journals.sagepub.com/eprint/mvxdh5nWD52b7Fg65N8w/full
Organized by the Italian Ministry of Health, the ERN Info Day’ was held in Rome (Italy) on October 16th, 2017. This meeting was aimed to create collaboration among the Italian HCPs involved in the European Reference Networks (ERN), that as highlighted by Andrzej Jan Rys (Director HelathSystems, Medical Products and Innovation, DG Sante’) are virtual […]
Following the call for applications for Rare diseases (3rd Public Health Programme) in support of the setup of new registries we are proud to announce that proposal for the creation the Unified Registry for Inherited Metabolic Disorders (U-IMD) has been approved by the EU. The major objective of this project is to establish the first unified […]
The 3rd World Conference on CDG for families and professionals in July 2017 gathered 51 families from 20 worldwide countries and united 73 professionals from 14 different countries. Half of the professionals were associated to MetabERN. Many cultures and backgrounds, but definitely one single goal: United to shape the future of CDG. Two full days […]
The International Congress of Inborn Errors of Metabolism (http://www.iciem2017.org/information.php#info) will take place place on September 5-8, 2017, in Rio de Janeiro, Brazil. Considering that many MetabERN members will be in Rio to attend it, we thought it would be nice to have opportunity to meet there. Therefore, with the kind help and support of Dr Roberto Giuliani and his team, […]
Brussels June 21st 2017_ MetaBERN is delighted to announce the appointment of its Coordinator, Prof Maurizio Scarpa, as the first Chairman of the European Reference Networks Board of Coordinators (ERN-BC). The ERN-BC was officially formalized on April 26 2017 during the first meeting of the 24 established European Reference Networks (ERN). The board gives strategic […]
Health care (or healthcare) is the diagnosis, treatment, and prevention of disease, illness, injury, and other physical and mental impairments in human beings.
On June 15-17th 2017, the 4th International Glycogen Storage Disease conference (IGSD2017) was organized by the University Medical Center Groningen in collaboration with the Dutch metabolic patient organization; VKS). In total, there were 400 participants from 36 countries, 53 oral presentations, 52 posters, 11 networking sessions and 2 Meet the Expert sessions. During IGSD2017, the […]
MetabERN is pleased to announce the Recordati Rare Diseases foundation Focus Course on SYNAPTIC METABOLISM AND BRAIN CIRCUITRIES IN IEM: EXPLORING OLD AND NEW DISORDERs held 16 – 18 November in Barcelona, Spain. The course will focus on the synapse as a highly specialized structure with specific chemical composition and metabolic functions necessary for an […]
The 10th European Metabolic Course of the Recordati Rare Diseases Academy (RRDA) is scheduled from October 10-14, 2017 and will take place in Heidelberg. The course is comprehensive and interactive and aims to ensure an appropriate level of knowledge to those training in this area of medicine. The programme includes plenary lectures of international experts, case presentations of participants and […]
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