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The goal of our online seminars on PBC is to provide specific updates on specific topics of the disease.
In this way we want to promote that there are more informed patients and that they are in a lively exchange with their doctors.
This is practiced exclusively through an online format, as this allows us to reach a larger audience, even beyond national borders (Austria, Switzerland, Liechtenstein). In addition, this strengthens the cooperation between the national PAGs.
The planning of a seminar starts with the invitation of those affected via operators of online forums, Facebook, self-help groups and patient organizations. A kick-off meeting then takes place to explore topics. Details and the final vote for the exact implementation are determined by surveys.
The results of the survey and the kick-off meeting formed the basis for the development of the 6 seminars including expert lectures in 2021.
The program and dates were announced via flyers and publications on various websites such as PBCnews.info, Deutsche Leberhilfe e.V., Hepatitis Aid Austria/Platform Healthy Liver and via the treating physicians.
Based on our online seminars, we have developed a compact information brochure that goes beyond the purely medical facts of the disease and takes up topics from the patient's perspective.
The brochure is intended to provide information and also help those affected to pass it on to their relatives to help build understanding of the disease.
In addition, the focus is on promoting patient exchange and strengthening self-help by introducing patient groups from German-speaking countries.
We received support from those affected, experts, PAGs, self-help groups, German Liver Aid, Hepatitis Aid Austria/Platform Healthy Liver and the sponsor Intercept Pharma.
Further seminars are currently being planned.