Film project by Britta Wauer
Showing face for more research on rare diseases
Medical research and new technologies are paving the way for a healthier future for us as a society. What can this look like if we courageously seize the opportunities that present themselves now? What motivates people who work in research and science, in treatment rooms, conference rooms and at their desks at home to ensure that seriously ill children can hope for the "medicine of tomorrow"? And what moves those who count on this commitment?
In recent years, Eva Luise and Horst Köhler have been able to win over numerous companions and supporters from very different fields for their cause. We will introduce some of them here over the next twelve months - as part of a film series that Grimme Award winner Britta Wauer has realized for the Eva Luise and Horst Köhler Foundation in the midst of the Corona pandemic. Sign up for our newsletter to never miss a post!
Film portrait Family Köhler
Solidarity with the "orphans of medicine"
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.
Learn moreFilm portrait Family Bopp
Like hitting the jackpot
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.
Erscheint im Februar 2023
Learn moreFilmportrait Jutta Gärtner und Hendrik Rosewich
We won't wait until Monday morning
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".
Learn moreFilmportrait Thorsten Marquardt
There is still a lot of potential
He often sees children without a diagnosis who have already been through a long odyssey. Thorsten Marquardt does not always succeed in finding out in time how to help them. He believes that families owe it to themselves to keep searching: "When a child dies, something is always left behind, as a legacy for the next child, so to speak." Professor Marquardt, who with his team has already discovered more than 20 diseases and made many of them treatable, is convinced that there is "still a lot of potential" in research on rare diseases.
Learn moreFilmportrait Annette Grüters-Kieslich
What are we waiting for?
Annette Grüters-Kieslich can look back on 40 years of commitment to children with rare diseases. Some fates have occupied her for decades. That may explain her impatience. The pediatrician, who has held many high-ranking offices during her career, considers it "unbearable" that there is still no concerted national research strategy, even though there are more promising new therapeutic options than ever before. And so she is starting to plan and forge an "alliance of the willing" herself. Because, "What are we waiting for?"
Learn moreFilmportrait Lina Paulsen und Jens Kiefer
There are moments when knowledge is hard to bear
IRF2BPL - when Johnny's developmental delay is given a name, the cheerful boy has just turned one year old. At that time, there are 21 affected children worldwide. Without treatment options, the extremely rare form of childhood dementia will eventually take away everything he has learned up to that point. For his parents, an emotional roller coaster ride begins between "sticking head in the sand" and "now more than ever". After the initial shock, they resolutely begin to make contact with other affected families and the few researchers working in the field.
Learn moreFilmportrait Christopher Baum
How does knowledge come into effect?
"We take care of the process of how knowledge comes into effect," says Christopher Baum, summarizing the mission of the Berlin Institute of Health (BIH). In order to bring new findings quickly into application, he says, it is essential to "go beyond the boundaries of one's own laboratory." Well-coordinated collaboration allows necessary steps to be worked through in parallel. Baum is convinced that this can shorten the development of new therapies by years. This is why it is not possible without broad alliances that also bring industry on board in good time.
Learn moreFilm portrait Nicole Schlautmann
How innovative drugs for rare diseases are created
"Thank you for my life!" The man who says this to Nicole Schlautmann should, statistically speaking, already be dead. The fact that he can still report on his health progress is largely due to an innovative drug that was developed shortly before. It is moments like this that drive the biology graduate. Today, she holds a management position at the international pharmaceutical company Pfizer, where she contributes her passion for the "rare" as Managing Director in Austria.
Learn moreFilmportrait Wolfgang Merkt
Digitization could revolutionize research
"You need a lot to do research - first and foremost, time and money," says Wolfgang Merkt. In university medicine, these are scarce resources. In the case of diseases that often affect only a few thousand people, it is also difficult to collect enough patient data for reliable clinical studies. Researchers therefore rely on good networking - but this also takes time. With the increasing digitization of medical data, research could therefore experience "a small revolution," Merkt hopes.
Learn moreFilmportrait Ivonne Möller
The godsend of her life
Much in life is chance. The fact that Ann-Christin is alive is thanks to a series of lucky coincidences, the attention of a laboratory employee and the perseverance of two researchers who do not rest until they find a treatment for the terminally ill infant. Today - seven years later - Ann-Christin is not a healthy child, but a happy one: she responds to her mother's affectionate jokes with a cheerful chuckle, and with her talker she increasingly shows how mischievous things are in her world of thought.
Learn moreFilmportrait Julien Park
It would be short-sighted not to do further research here
Julien Park is a pediatrician and Clinical Scientist at Münster University Hospital. This means that he is released from clinical duties for a certain amount of time. He dedicates this protected research time to rare diseases. He is motivated not only by the desire to help patients and their families in their helplessness, but also by the fact that there is so much to learn from rare diseases: "Because there are no established treatment options, medicine is forced to be very innovative."
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Filmportrait Heidrun Irschik-Hadjieff
In vielen kleinen Schritten Größeres bewegen
„Das Tragische ist, das alles in unserer Welt sehr, sehr lange dauert“, sagt Heidrun Irschik-Hadjieff und meint damit: Die Entwicklung von Medikamenten. Die Diagnosewege. Die Digitalisierung im Gesundheitswesen. Weil bei Seltenen Erkrankungen mitunter aber jeder Tag zählt, versteht sich Takeda als Vorreiter neuer Möglichkeiten, indem es beispielsweise Apps zur Diagnoseunterstützung entwickelt. „Diese Daten machen uns klüger, die helfen uns weiter“, ist die Pharmamanagerin überzeugt, die so in vielen kleinen Schritten Größeres bewegen will.
Erscheint im November 2023
Learn moreAs different and unique as the portrayed people and their stories are, they all share the conviction: We can and must do more so that all people can participate in the advances of modern medicine. The enormous gain in knowledge that we are currently experiencing and the possibility of networking knowledge worldwide opens up new, hopeful perspectives for the "orphans of medicine". With the "Alliance4Rare"the foundation and its partners are therefore launching a research offensive to ensure that children and young people with rare diseases can participate in the medicine of tomorrow. To this end, we also need your support! Become part of this alliance and help with your donation to establish the Alliance4Rare research network for rare diseases in children nationwide!
We would like to thank the companies Pfizer and Takeda, which supported the production of the film series with 75,000 euros each, so that the foundation was able to realize it cost-neutrally. To ensure journalistic independence, the selection of interview content and editing were at all times solely in the hands of director Britta Wauer. We thank her for the great dedication and perseverance with which she has accompanied our work for many years. We would also like to express our heartfelt thanks to all those portrayed for their time, patience and trust!