Ganz gleich, ob Kind oder erwachsen — niemand soll sich mit einer ernsten, oft chronischen und lebensverkürzenden Erkrankung allein gelassen fühlen. Es ist diese Überzeugung, mit der Eva Luise und Horst Köhler 2006 eine Stiftung für Menschen mit Seltenen Erkrankungen auf den Weg bringen. Vieles kennen sie aus eigener Erfahrung, anderes lernen sie durch die Begegnungen mit Betroffenen kennen: die verzweifelte Suche nach Antworten, jahrelange Odysseen von Klinik zu Klinik und schmerzhafte Hilflosigkeit angesichts fehlender Behandlungsoptionen. Immer wieder erleben die Köhlers aber auch, was es bedeutet, wenn endlich eine Diagnose gestellt werden kann, es Hoffnung auf Linderung und manchmal sogar auf Heilung gibt.
That is why the family decides at the beginning of Horst Köhler's first term as Federal President to become active themselves for better health care for people with rare diseases. Even if the individual disease is rare, there are at least four million affected children, adolescents and adults in Germany alone, explains Ulrike Köhler. Keeping in touch with these people, being a voice for them, is particularly important to her mother: "And I think she almost acts like a lighthouse in this," says her daughter, who is herself involved in the foundation's advisory board.
"Creating hope is what my wife set out to do, and I admire her for it," confesses former German President Horst Köhler, who is convinced: "Everyone must have the right to health in a humane, good society. More can be done to improve the lot of people with rare diseases." Throughout the health care system, he said, there is too little communication, coordination and knowledge about rare diseases - not just the medical issues, but the social issues as well. "It is a question of justice to pay more attention to this," Horst Köhler emphasizes.
And it's a question of foresight: Because time and again, research for rare diseases leads to therapies for much more common diseases, explains Eva Luise Köhler. For example, with regard to a bone disease that has so far only been diagnosed in about 100 people worldwide, scientists have developed a very efficient drug to treat osteoporosis, which in turn limits the quality of life of one in four women over 50. Seen in this light, she says, studying rare diseases is more than a moral duty: "It's an important key to understanding our bodies and the complex processes that keep them healthy."
Experts estimate that around 8,000 rare diseases have been discovered so far, and new ones are constantly being added. "The vast majority of these diseases are genetic, and many of the patients are children," explains Eva Luise Köhler. "And now imagine the parents who are anxious, who don't know: What does my child have? ' Who then learn that he or she is battling a disease that has not been researched, for which there is no medication." Time is running out for these people, which is why it is important to conduct more intensive research in these areas, warns Eva Luise Köhler.
Research is the key to a healthier future - and this is especially true for people with rare diseases. That's why the foundation, together with many friends and supporters, is focusing precisely on this, as Eva Luise Köhler emphasizes: "You can't give this hope as a small foundation on your own, you need a lot of comrades-in-arms, ultimately the commitment of society as a whole."