OBJECTIVE: MetabERN activities will be supported through presence at different levels, including interaction with EU institutions, scientific conferences, as well as on- and offline publications. Patient education and empowerment will be achieved through wide knowledge dissemination by patient support group education, newsletters, videos, patient conferences, teleconferences, educational presentations on the web. The “physical” and “virtual” presence of MetabERN at these sites will also increase public awareness, which can have direct spinoffs, like early patient detection, social or psychologic support, but also bring extra opportunity for new scientific ideas, public interest, out of the box thinking in research on different MetabERN topics and could offer more opportunity for additional funding. SSIEM and the Journal of Inherited Metabolic Disease (JIMD) as Official Journal will be strongly involved.
Organisation of meeting and teleconferences to find the most efficient and creative ways to communicate between centres and their supporting networks
Traditional media outreach including a press release for the initial launch of the project and publication of editorials in relevant peer reviewed outlets such as the Journal Inborn Errors of Metabolism
Production of dissemination materials such as the production of MetabERN-branded leaflets for hospital and academic centers
Profiling of MetabERN in relevant medical congresses: sub-networks submit an information poster on their goals and organization at the next Society for the Study of Inborn Errors of Metabolism meeting, which is also the world conference for IEM next year. The editorial team of the Journal Inborn Errors of Metabolism will write an editorial on MetabERN.
Development of online dissemination content for EU IT Platform that will include extensive information on IMDs.
Set up of social media accounts (Facebook, Twitter)
Dissemination of general information addressed to a lay audience and ad hoc information for patients and their families as well as for healthcare professionals
Develop dissemination channels (website, social media, newsletter)
Patient engagement: attendance of 1 patient meeting per Member State
External dissemination: press release, article in medical journal, MetabERN brochure for patients