Who does research for the orphans of medicine?
Unfortunately, the answer to this question is: far too few. For fatally, the immense need for effective medical help in the field of rare diseases has long been matched by a lack of research activities.
In pediatrics and adolescent medicine in particular, there is a shortage of physicians who also work scientifically in parallel to their clinical activities, because career prospects in other specialties are often more promising. However, pediatricians who do not shy away from the balancing act between bedside and laboratory are indispensable for research: They are trained to conduct studies with children, enjoy the trust of the families concerned and, thanks to their clinical experience, are in a position to formulate medically relevant questions even about rare clinical pictures.
In order to prepare researching pediatricians for these demanding tasks and to provide them with the necessary freedom for scientific work at a high level, the Alliance4Rare research network initiated by the Eva Luise and Horst Köhler Foundation also relies on structured clinician-scientist programs: Through cross-site networking, targeted mentoring, and joint events such as summer schools, we are laying the foundation for a growing network of "convincers" who dedicate their hearts and minds to research and care in the field of rare diseases.
The article was published on February 24, 2023 in +3 Magazin, a supplement of the Süddeutsche Zeitung. Article ist am 24. Februar 2023 im +3 Magazin erschienen, einer Beilage der Süddeutschen Zeitung.