ALLIANCE4RARE: CLINICIAN SCIENTISTS IN PORTRAIT Dr. Nina-Christine Knopf, Gustav-Carus Universitätsklinik Dresden

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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Patient Guides Day "We need more speed. Patients don't have time!"

In ihrem Vortrag beim „Tag der Patientenlotsen“ betonte Annette Grüters-Kieslich, Vorsitzende der Eva Luise und Horst Köhler Stiftung, die Notwendigkeit einer koordinierten Patientenversorgung insbesondere auch im Bereich der Seltenen Erkrankungen. Lotsen spielen bei dieser komplexen multiprofessionellen und interdisziplinären Aufgabe als „Kümmerer“ eine wichtige Rolle. Wichtig sei nun, dass erprobte Ansätze auch wirklich schnell und nachhaltig in die Regelversorgung überführt werden.

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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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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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RESEARCH AWARD 2009 - UPDATE 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.

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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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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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