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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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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

RESEARCH AWARD 2015 - UPDATE

04.01.2023

When cilia remain motionless: Researcher identifies 40 genetic defects

The Eva Luise Köhler Research Award has been granted annually since 2008 to promote research into rare diseases. The awarded money of €50,000 each has already enabled more than a dozen innovative research projects to be launched. The 2015 award winner, Prof. Dr. Heymut Omran, told journalist Sandra Arens how his research in the field of Primary Ciliary Dyskinesia has developed since he received the award.

RESEARCH AWARD 2009 - UPDATE

27.10.2022

Vulnerable as a butterfly - New drugs against epidermis bullosa

The Eva Luise Köhler Research Award has been granted annually since 2008 to promote research into rare diseases. The awarded money of €50,000 each has already enabled more than a dozen innovative research projects to be launched. The 2009 award winner, Prof. Dr. Leena Bruckner-Tuderman told journalist Sandra Arens how her research in the field of epidermis bullosa has developed since the 2009 award.

RESEARCH AWARD 2008 - UPDATE

21.09.2022

Overcoming boundaries and saving lives with the "turbo enzyme"

The Eva Luise Köhler Research Award has been granted annually since 2008 to promote research into rare diseases.
The awarded money of €50,000 each has already enabled more than a dozen innovative research projects to be launched. Journalist Sandra Arens asked the first award winners, Prof. Dr. Volkmar Gieselmann and Prof. Dr. Hans-Joachim Galla, how their research on lysosomal storage disorders has developed since they received the award in 2008.

RESEARCH AWARD 2018

28.02.2018

Help for children with severe early childhood epilepsy

Für ihre Forschung zur Behandlung einer besonders schweren frühkindlichen Form der Epilepsie erhielt Dr. Ulrike Hedrich-Klimosch, Biologin am Hertie-Institut für klinische Hirnforschung in Tübingen, gemeinsam mit Dr. Stephan Lauxmann und Prof. Dr. Holger Lerche vom Universitätsklinikum Tübingen den Eva Luise Köhler Forschungspreis 2018.

RECOGNITION AWARD 2015

28.02.2015

Sickle cell disease - newborn screening saves lives

Der Kinderarzt Dr. Stephan Lobitz hat maßgeblich dazu beigetragen, dass die Untersuchung auf die Sichelzellerkrankung im Jahr 2021 in das reguläre Neugeborenenscreening in Deutschland aufgenommen wurde. Den Anerkennungspreis der Eva Luise und Horst Köhler Stiftung für Seltene Erkrankungen erhielt er bereits 2015.

RESEARCH AWARD 2012

28.02.2012

New therapy for subtype of brittle bone disease

Für seine Erkenntnisse zur Behandlung der Glasknochenkrankheit mit Antikörpern erhielt der Wissenschaftler und Kinderarzt Professor Dr. Oliver Semler vom Universitätsklinikum Köln 2012 den Eva Luise Köhler Forschungspreis.

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