To create and constantly update such a complex website concerning a rare group of diseases on a scientific basis in an interdisciplinary, transparent and consented way is only possible as a long-term joint project. This is especially true since the project has grown continuously and did not end with any intermediate release.
The idea for this freely accessible publication of expert knowledge on the internet arose from a long-standing book project on this topic. Shortly before its completion in April 2016, in a lonely mountain chalet, the idea arose to reach a much larger target group by publishing all content freely online and not as a printed book. This should better ensure quick and easy accessibility for treating colleagues as well as informing those affected by the disease.
After research into all the necessary technical requirements, the project initially proved difficult to implement because of its significant additional complexity, unlike a printed reference atlas. The many additional capabilities and requirements for an online publication, such as cross-references/links, interactive glossary, image editing, videos, interactive explanations, diagrams, etc., require considerable technical effort in addition to the pure written content.
At this point, a man comes into the picture who is strongly and personally committed to the cause in a charitable way. His name is Werner J. Siebert from Kassel, Germany. Through intensive discussions with him, it was possible to develop a concept that is intended to be helpful for laypeople, patients, their relatives and, in particular, medical professionals.
With the inauguration of the “Deutsche interdisziplinäre Gesellschaft für Gefäßanomalien (DiGGefa)” in January 2017, now also registered as the “German interdisciplinary Society for Vascular Anomalies (GISVA)”, the project was able to gain even more pull in medical interdisciplinary terms, as proven medical experts were able to contribute their many years of experience as authors.
All individual articles, updates, interactive elements and translations are initially reviewed by selected experts in a multi-stage process, and then standardized in terms of content and style in an overall review. The discussions and coordination processes that took place during this procedure improved the content that is now available. In addition, it demonstrated that interdisciplinary discourse across disciplinary boundaries is the only way to achieve the desired results.
My personal thanks go to all authors, reviewers, programmers, managers and patients (who made this work possible by agreeing to the anonymous publication of their pictures on the internet) as well as to all relatives and friends who contributed their experiences. They have succeeded in revolutionizing the freely accessible knowledge of the subject of vascular anomalies by working together for many years.
This Compendium started in German. Now we proudly present our first major extension in the form of an English version. With future extensions already planned in many world languages, it is a successful joint effort.
It will continue to grow, be constantly updated, and hopefully achieve its goal: to increase the knowledge about these rare diseases for the benefit of all.
Halle (Saale), July 1, 2021
Prof. Dr. Dr. Walter Wohlgemuth
July 01, 2021