News

Filmportrait 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".

Ceremony of the 15th Eva Luise Köhler Research Award for Rare Diseases

Eva Luise Köhler will present the 15th laureate of the Research Award for Rare Diseases named after her on Friday, June 9, 2023, starting at 5 p.m. at the Berlin-Brandenburg Academy of Sciences and Humanities (Jägerstraße 22-23, 10117 Berlin - entrance via Markgrafenstraße).

Early Detection and Treatment - The Role of Prevention in Rare Diseases

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 discuss possibilities and limits of prevention in the field of rare diseases from a medical, ethical and social perspective.

Event notice

Information events Rare Diseases Bavaria

Herzliche Einladung im Rahmen der Kampagne „Seltene Erkrankungen Bayern“: Informationsveranstaltung zum komplexen Schmerzsyndrom CRPS und zu SCN2A Mutationen.

Film portrait Family Bopp

Rescue beyond all likelihood

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.

Filmportrait Familie Köhler

Solidarität mit den „Waisen der Medizin“

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.

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Alliance4Rare

gemeinsam Zukunft schaffen

Film project by Britta Wauer

Showing face for more research on rare diseases

In the midst of the pandemic, filmmaker Britta Wauer portrayed companions and supporters of our foundation's work. In twelve episodes, the Grimme Award winner explores what drives people who work in research and science, in treatment rooms, meeting rooms or at their desks at home to ensure that (their) children with rare diseases can hope for urgently needed therapies.

Zur Filmübersicht

Alliance4Rare

17.03.2023

Research and medical care are inseparable for rare diseases

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.

Article

24.02.2023

Who is doing research for the orphans of medicine? "Far too few!" - Eva Luise Köhler in +3 Magazine

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.

Article

23.02.2023

Prof. Dr. Annette Grüters Kieslich: Why rare diseases affect us all

"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!

Article

23.02.2023

"Flying blind" - article by Eva Luise Köhler in the STERN supplement "Rare diseases"

In the current STERN supplement, Eva Luise Köhler emphasizes the importance of medical registries in the field of rare diseases

Rare diseases Bavaria

13.12.2022

"Rare disease patients are not alone!"

Unter der Schirmherrschaft von Eva Luise Köhler fiel am 8. Dezember 2022 in Freising der Startschuss für die Kampagne „Seltene Erkrankungen Bayern“. Ziel der von MdB Erich Irlstorfer angestoßenen Initiative ist, mit vielen verschiedenen Aktionen und Veranstaltungen im Jahr 2023 den Seltenen Erkrankungen Gehör zu verschaffen und auf die Situation der Betroffenen aufmerksam zu machen.

Augsburg Rare Disease Day

17.10.2022

"There are some who are in darkness And the others are in light..."

At the "Rare Disease Day" of the Augsburg Center for Rare Diseases, Eva Luise Köhler thanked the team around Dr. Desirée Dunstheimer for their dedicated work and appealed to the guests in the hall: "Let's continue to fight together for the interests of the rare!"

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