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 2008 - UPDATE 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.

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PATIENT STORY When cold paralyzes the body - Living with rare muscle disease

Matthias suffers from the so-called Eulenburg paramyotonia congenita - a hereditary sodium channel disease. Only one in 180,000 people in Germany is affected. At low temperatures, his muscles stiffen within minutes. For a long time, patients like him were helpless facing their fate. But then a team of researchers made a groundbreaking discovery.

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ALLIANCE4RARE: CLINICIAN SCIENTISTS IN PORTRAIT Dr. Felix Boschann, Charité Universitätsmedizin

In order to provide research-based pediatricians with the necessary freedom for high-level scientific work during their qualification, the research network Alliance4Rare, initiated by the Eva Luise and Horst Köhler Foundation, focuses among other things on structured clinician scientist programs. Some of the fellows who have recently started their work introduce themselves and their projects.

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Filmportrait Dr. Julien Park, Clinician Scientist "Es wäre kurzsichtig, hier nicht weiter zu forschen"

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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INTERVIEW "We learn a lot from 'the rare' for the treatment of common diseases. Everyone benefits from this!"

In the BPI Publication "Themendienst" about Rare Diseases, Prof. Dr. Annette Grüters-Kieslich describes challenges for people with rare diseases and points out approaches for improvements. And she emphasizes: "We learn a lot from the rare diseases for the treatment of common diseases. Everyone benefits from this!"

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Online survey until October 31 Study: Rare diseases during the pandemic

How did people with rare diseases fare during the Corona pandemic? An online survey as part of the "RESILIENT-SE-PAN" project funded by the Eva Luise and Horst Köhler Foundation aims to uncover gaps in care and identify pointers for improving care. You are cordially invited to participate!

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