Challenge H

Rare and Valuable. Knowledge Preservation, Communication and Tangible Learning.

Proposed by

Around 8000 rare diseases are now listed, and the number is constantly increasing. Some rare disease experts have spent their entire lives researching these diseases. During this time, they have built up a regular patient base that continuously comes to them for treatment. New patients also benefit from this knowledge. Most of these specialists are now over 70 years old and would like to retire. The care situation for some patients with rare diseases and/or disabilities will deteriorate rapidly as a result and will no longer be accessible for future patients.

Due to the current shortage of specialists, these experts are unable to find suitable successors. They are now faced with the problem that their accumulated knowledge would be lost after they retire.

Valuable and proven knowledge (which often takes years to accumulate in the case of rare diseases, as there is usually no “normal” patient flow) is lost.

Some of this knowledge and therapy methods are unique in Germany.

If this knowledge is not passed on, new patients and new specialists would have to go through the arduous process again.

What could a suitable system look like to collect and bundle existing knowledge for various diseases / rare diseases and make it efficiently available to future specialists?