Implementation of EXABO - An Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases.

Rare conditions can make it difficult for physicians and healthcare providers to find the right answers and treatment for patients suffering rare diseases. The number of experts specializing in rare diseases in Europe is low. In order to ensure qualified diagnosis, treatment and care for these patients, the European Commission has founded the European Reference Networks (ERNs), which are virtual networks that include healthcare providers across Europe aiming to provide better care for patients across Europe. The European Reference Network LUNG (ERN-LUNG) has been established for patients with rare respiratory diseases seeking care and advice on all aspects of rare respiratory diseases. In the context of ERN-LUNG, the Expert Advisory Board (EXABO) was implemented. EXABO is a pan-European internet platform based on a question-answering system to support answering questions regarding all areas of rare respiratory diseases. This paper gives a brief overview of the first steps taken regarding the implementation of the EXABO platform, the challenges faced and the lessons that have been learned.

Conception of an Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases.

Due to low prevalence of rare diseases and lack of expertise, patients suffering rare diseases are challenged with finding experts that are specialized and experienced in treating their conditions and get qualified answers. To address this issue, the approach of an interactive platform was made, which should allow affected patients or physicians the possibility to ask experts their specific questions to gather and improve their knowledge about their condition. This paper introduces the pan-European Internet platform EXABO, an Expert Advisory Board, which is developed within the framework of the European Reference Network for rare respiratory diseases (ERN-LUNG). The purpose of establishing this platform is initially dedicated to rare respiratory diseases in whole Europe, whilst the set-up is however, planned to be a generic tool for additional diseases or groups of diseases. This paper gives an overview of the concept and planning of the EXABO platform and shows how the platform is to be implemented.