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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Event Note 2nd Gene Therapy Forum: Challenges and Opportunities in Rare Genetic Diseases on September 17

What are the challenges in finding a diagnosis for rare genetic diseases? Which factors can be decisive for the success of a gene therapy? These questions will be addressed at the 2nd Forum on Gene Therapy for Medical Professionals on September 17, 2022.

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Event Note "Rare Disease Day" at the Augsburg Center for Rare Diseases on September 24, 2022.

The Augsburg Center for Rare Diseases cordially invites to the "Rare Disease Day" on September 24. Among the speakers are Eva Luise Köhler and Prof. Dr. Annette Grüters-Kieslich.

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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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Research Award 15th Eva Luise Köhler Research Award for Rare Diseases

In order to improve medical care for the "orphans of medicine", the Eva Luise and Horst Köhler Foundation in cooperation with ACHSE e. V. has been offering a research award for rare diseases since 2008. Applications for the 15th research prize, which will be awarded in Berlin in June 2023, could be submitted until September 4, 2022.

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