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
STELLUNGNAHME ZUM ECKPUNKTEPAPIER Krankenhausreform: Seltene Erkrankungen nicht vergessen!

Am 10. Juli 2023 haben sich Bund und Länder auf die Eckpunkte für die Krankenhausreform geeinigt. In diesem Zusammenhang appelliert die Eva Luise und Horst Köhler Stiftung an die politisch Verantwortlichen: Menschen mit Seltenen Erkrankungen dürfen nicht vergessen werden!

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DATE NOTICE: JULY 7-9, 2023 TRANSFUSION Hackathon 2023 on #RareDiseases

The TRANSFUSION Hackathon 2023 in Nuremberg will focus on rare diseases. You are cordially invited to participate and think along!

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ONLINE SURVEY Rare Barometer: Should screening for rare diseases at birth be standard practice?

The current Rare Barometer survey is online: As part of the Screen4Care research project, opinions of patients and family members are requested on the topic of newborn screening for rare diseases. Take part now!

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PRESS RELEASE RESEARCH AWARD 2023 Award for a therapy development for the neurological hereditary disease PCH2a

Eva Luise Köhler will hand over the research award named after her to molecular biologist Dr. Simone Mayer from Tübingen in the presence of Federal Minister of Health Prof. Dr. Karl Lauterbach at the Berlin-Brandenburg Academy of Sciences and Humanities on Friday, June 9, 2023 at 5 pm. Together with her, Dr. Julia Matilainen and Dr. Axel Lankenau from the self-help association PCH-Family are honored

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Information Liste Seltene Erkrankungen

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TERMINHINWEIS "Der Blick ins eigene Erbgut" - Tagesspiegel Patient:innen-Dialogforum

Etwa 80 Prozent aller Seltenen Erkrankungen werden durch Mutationen in einem einzigen Gen verursacht. Moderne Methoden der Genommedizin bieten neue Chancen in der Diagnosefindung - und werfen zugleich ethisch-rechtliche Fragen auf. Das 2. Tagesspiegel Patient:innen Dialogforum lädt zur Diskussion ein: 1. Juni 2023, in Berlin und online.

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