The Online Expert Advice system is designed and implemented in accordance with the EU-funded Expert Advice System on Cystic Fibrosis. People living with rare diseases have to face many common challenges, such as delayed or inaccurate diagnosis, difficulties in accessing the right treatment and lack of knowledge or limited access to expertise. The pan-European Internet platform EXABO, is an Expert Advisory Board, which is developed within the framework of the European Reference Network for rare respiratory diseases (ERN-LUNG) and aims to help people who are suffering or have questions regarding rare respiratory diseases to get a better understanding about rare pulmonary conditions.
With the Online Expert Advice System, patients and physicians can address their specific questions concerning rare respiratory diseases to experts who are specialized and experienced in this field.Providing online second opinions on complex health conditions, makes it unnecessary for the patient to travel long journeys to seek medical advice. Through the Expertise of the ERN-LUNG members, patients can receive input from several highly specialized lung units across Europe on rare lung diseases.
Many patients experience difficulties in receiving health care services in their region or country due to scarce, fragmented and uncoordinated services, which means that they donĀ“t all have equitable access to healthcare services, especially for patients who are suffering rare lung-diseases. The online Expert Advice System offers an opportunity to help patients find reliable information on their individual health issue.