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.
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Article "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

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CORD-MI Symposium 2022 Germany must catch up to act as a strong partner

"Digital Collaboration for Diagnosis and Therapy in the Field of Rare Diseases" - this was the title of the symposium of the Collaboration on Rare Diseases of the Medical Informatics Initiative (CORD-MI) held at the Kaiserin-Friedrich Haus in Berlin on December 1 and 2, 2022. Among the speakers was Prof. Dr. Annette Grüters-Kieslich, Chairwoman of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases.

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The Innovation Committee at the Federal Joint Committee (G-BA) is funding the FAIR4Rare project as one of 32 new projects in the field of health services research. It supports the accompanying evaluation of the development process for an open National Registry for Rare Diseases (NARSE). 

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