News

Ceremony of the 15th Eva Luise Köhler Research Award for Rare Diseases

Eva Luise Köhler will present the 15th laureate of the Research Award for Rare Diseases named after her on Friday, June 9, 2023, starting at 5 p.m. at the Berlin-Brandenburg Academy of Sciences and Humanities (Jägerstraße 22-23, 10117 Berlin - entrance via Markgrafenstraße).

Early Detection and Treatment - The Role of Prevention in Rare Diseases

Detect early to be able to act in the best possible way - the 7th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation will take place on June 9/10, 2023. Together we would like to discuss possibilities and limits of prevention in the field of rare diseases from a medical, ethical and social perspective.

Event notice

Information events Rare Diseases Bavaria

Herzliche Einladung im Rahmen der Kampagne „Seltene Erkrankungen Bayern“: Informationsveranstaltung zum komplexen Schmerzsyndrom CRPS und zu SCN2A Mutationen.

Film portrait Family Bopp

Rescue beyond all likelihood

Within a few months, the previously lively three-year-old has become an apathetic, convulsing bundle. When the parents shortly thereafter also recognize the first symptoms of the mysterious condition in their younger daughter, a race against time begins. The fact that a highly effective therapy is finally found seems like a stroke of luck beyond all probability. But it is also a testimony to the fact that, in principle, a cure is possible if treatment is started in time.

Filmportrait Familie Köhler

Solidarität mit den „Waisen der Medizin“

Early in her husband's first term, Eva Luise Köhler decided to lend her voice to people with rare diseases. In doing so, she became a "beacon of hope" for many. Her goal: more research so that all people can realize their right to health. The Köhler family was aware that such a mission would require many comrades-in-arms and staying power. "My wife set out to do this, and I admire her for it," confesses the former German president in an interview with Britta Wauer.

RESEARCH AWARD 2015 - UPDATE

When cilia remain motionless: Researcher identifies 40 genetic defects

Der Eva Luise Köhler Forschungspreis wird seit 2008 jährlich vergeben, um die Erforschung Seltener Erkrankungen voranzutreiben. Durch das Preisgeld in Höhe von jeweils € 50.000 konnten bereits mehr als ein Dutzend innovative Forschungsvorhaben gestartet werden. Der Preisträger 2015, Prof. Dr. Heymut Omran, hat der Journalistin Sandra Arens berichtet, wie sich seine Forschung auf dem Gebiet der Primären Ciliären Dyskinesie seit der Auszeichnung entwickelt hat.

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Alliance4Rare

gemeinsam Zukunft schaffen

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

ALLIANCE4RARE: CLINICIAN SCIENTISTS IN PORTRAIT

11.11.2022

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.

INTERVIEW

28.09.2022

"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.

ALLIANCE4RARE: CLINICIAN SCIENTISTS IN PORTRAIT

05.09.2022

Dr. Felix Boschann, Charité Universitätsmedizin

BEWERBUNG BIS 30. SEPTEMBER

06.07.2022

Alliance4Rare: Current Call for proposals

Current call for proposals: The Alliance4Rare, an initiative of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases, funds research projects on rare diseases in three program lines. A central element of the projects should be the development of targeted therapeutic approaches for rare diseases with a childhood manifestation. The application period runs until September 30, 2022.

Bis 10. Januar 2022 bewerben!

15.12.2021

Aktuelle Ausschreibung: Clinician Scientists und Advanced Clinician Scientists for Rare Programm

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