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How do you work in the awareness that you are often the only hope for families with a seriously ill child? Jutta Gärtner and Hendrik Rosewich are one of the few points of contact for pediatric neurological disorders, such as pediatric dementia or unclear movement disorders. Once a diagnosis is made, a grueling race against time begins. In the search for therapies, patient care and research must go hand in hand - also often on weekends. The neuropediatricians at the University Hospital Göttingen experience their work as "deeply meaningful".

Eva Luise Köhler wird am Freitag, 9. Juni 2023 ab 17 Uhr in der Berlin-Brandenburgischen Akademie der Wissenschaften den nach ihr benannten Forschungspreis für Seltene Erkrankungen verleihen. Die Anmeldung ist ab sofort möglich.

Detect early to be able to act in the best possible way - the 7th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation will take place on June 9/10, 2023. Together we would like to shed light on the possibilities and limits of prevention in the field of rare diseases from a medical, ethical and social perspective. Cordial invitation!

Within a few months, the previously lively three-year-old has become an apathetic, convulsing bundle. When the parents shortly thereafter also recognize the first symptoms of the mysterious condition in their younger daughter, a race against time begins. The fact that a highly effective therapy is finally found seems like a stroke of luck beyond all probability. But it is also a testimony to the fact that, in principle, a cure is possible if treatment is started in time.

Early in her husband's first term, Eva Luise Köhler decided to lend her voice to people with rare diseases. In doing so, she became a "beacon of hope" for many. Her goal: more research so that all people can realize their right to health. The Köhler family was aware that such a mission would require many comrades-in-arms and staying power. "My wife set out to do this, and I admire her for it," confesses the former German president in an interview with Britta Wauer.

In an interview with Themenbote Medizin, Professor Dr. Annette Grüters-Kieslich, Chairwoman of the Foundation's Board of Directors, introduces the Alliance4Rare research initiative. She explains what the alliance is all about, where its focus lies and how researching pediatricians are specifically supported.

Who is doing research for the orphans of medicine? "Far too few!" is the answer given by Eva Luise Köhler in the current +3 Magazine, a supplement of the Süddeutsche Zeitung. 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.

"Why rare diseases affect us all", explains the chairwoman of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases, in the current publishing special "Rare Diseases" of the Frankfurter Allgemeine Zeitung. One thing is clear: Rare is not insignificant!