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Education and training for patients and health professionals: the experience of ERKNet

date:  03/07/2019

One of the key missions of ERKNet is the dissemination of knowledge about rare kidney diseases among patients and physicians. The Network’s Taskforce for Education and Training has established a comprehensive educational programme encompassing a curriculum of Webinars, postgraduate workshops, a regular Journal Watch service, and a multilingual series of patient-oriented disease information leaflets. All activities are free of charge and all contents are made permanently available through the ERKNet Website.

The ERKNet Webinars comprise state of the art lectures on rare kidney diseases delivered by leading experts in the field. Moderated by members of the Taskforce, the Webinars comprise a 30-minute presentation followed by a 15-min Q&A session. Several multiple-choice questions are answered by the attendees during the lectures to assess their baseline state of knowledge and the success of knowledge transfer. The recorded sessions and the presentation slides are published for offline viewing on the ERKNet Website. A customised evaluation survey gives feedback on the content and quality of the webinars. Attendees can suggest topics for future Webinars, which are subsequently prioritised and organised by the Network’s expert workgroups. Approaching Webinars are announced on the Network´s Website and to ERKNet Newsletter subscribers. In addition, notifications are sent out to the membership of national and international renal societies, ensuring awareness and participation of the global pediatric and adult nephrology communities.

The Journal Watch (JWatch) service aims to optimise the dissemination of novel research accomplishments by continuous monitoring of peer-reviewed journals for the latest papers on rare kidney disease research. JWatch subscribers receive monthly newsletter updates on the latest research in their field of interest.

The Network has developed an online inventory of available resources of patient oriented medical information, currently counting more than 600 documents and website links about rare kidney disorders. New multilingual standardised information documents are developed for those diseases where no information is available or documents are limited to single languages.