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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Rare diseases Bavaria "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.

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Augsburg Rare Disease Day "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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INTERVIEW "There is a lack of role models and research funding"

In an interview with 'themenbote medizin', Sanna Börgel, Managing Director of Alliance4Rare gGmbH, introduces the initiative of the Eva Luise and Horst Köhler Foundation and explains how the civil society alliance intends to launch a visionary care and research network for rare diseases and thus advance the development of modern therapeutic approaches.

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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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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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... Gabriele Müller, Center for Evidence-Based Health Care Dresden

Improving the medical care of people with rare diseases: With this goal in mind, the TRANSLATE-NAMSE joint project has developed and successfully implemented measures over the past three years. Here, those responsible for the TRANSLATE-NAMSE project describe their experiences and expectations.

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