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Research
Call for Applications: 19th Eva Luise Köhler Research Award for Rare Diseases
To improve medical care for the “orphans of medicine,” the Eva Luise and Horst Köhler Foundation, in cooperation with ACHSE e.V., has awarded a Research Award for Rare Diseases since…
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Events
Breaking Boundaries Together: Review of the 10th Rare Disease Symposium
Under the motto “Breaking Boundaries: Uniting People, Knowledge and Systems in Rare Diseases,” the 10th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation brought together international experts…
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Events
10th Rare Disease Symposium – Session 1: Case Study Rare Obesity
The first session of the Rare Disease Symposium on April 17, 2026, used the case study of genetic obesity to vividly show how closely personal experiences, biological mechanisms, and therapeutic…
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Events
10th Rare Disease Symposium – Session 2: Collaboration Beyond Borders
The second session of the Rare Disease Symposium on April 17, 2026, focused on how international collaboration and structured data use can advance the diagnosis and research of rare diseases.
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Events
The third session of the Rare Disease Symposium on April 17, 2026 in Berlin focused on new genomic technologies and the role of powerful data infrastructures for the future of…
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Events
10th Rare Disease Symposium – Closing Lecture: Mapping Invisible Boundaries
The closing of the Rare Disease Symposium on April 17, 2026, was shaped by Meghan Halley, Assistant Professor of Pediatrics (Research) at Stanford University’s Center for Biomedical Ethics, who offered…
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Events
Expert Discussion in the Bundestag: Advancing the Medical Registry Act Together
How should medical registries be designed to realize their full potential for people with rare diseases? This question was at the heart of an expert discussion organized by the Eva…
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Events
On April 17, 2026, the 18th Eva Luise Köhler Research Award was presented at the Berlin-Brandenburg Academy of Sciences, marking our foundation’s 20th anniversary. Around 200 guests from science, medicine,…
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Events
FAIR4Rare Final Workshop: Towards a Sustainable Registry Landscape for Rare Diseases
How can rare diseases be better researched and treated despite small case numbers and fragmented data? The final workshop of the FAIR4Rare project highlighted why a national registry like NARSE…
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Dates
20 Years of Commitment to People with Rare Diseases
Since being officially recognized on March 21, 2006, the Eva Luise and Horst Köhler Foundation has been dedicated to people with rare diseases. A visit to Bellevue Palace with Elke…
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Information & Opinion
Rare Diseases in Focus: Health Policy Dialogue with Federal Health Minister Nina Warken
Rare diseases present special challenges for the healthcare system: They require specialized care, close networking between research and clinical practice, and sustainable long-term structures. In conversation with Federal Health Minister…
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Information & Opinion
“Affected families are incredibly strong and at the same time need reliable support”
On Rare Disease Day, Dr. Ulrike Köhler, a trustee of our foundation and jury member of the HanseMerkur Child Protection Award, spoke with HanseMerkur about the unique challenges faced by…