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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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Events
“Five years to a diagnosis is five years too many”
At the 10th Political Expert Talk on Rare Disease Day, to which Takeda invited participants to Berlin on March 2, 2026, a key question took center stage: How can diagnosis…
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Events
Rare Diseases as a Benchmark for True Patient Orientation
The true measure of patient orientation in our healthcare system is revealed where care becomes especially complex. At the annual reception of the Federal Government’s Patient Representative, Prof. Dr. Annette…
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Events
Families with Rare Diseases Need More Than Just Medical Solutions
Rare diseases don't stop at the doctor's door: they impact education, participation, and balancing care and work. In a personal exchange between Eva Luise Köhler, Prof. Dr. Annette Grüters-Kieslich, and…
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Events
Needs-based care for women with rare diseases: Parliamentary breakfast sets impulses
Women with rare diseases often face a double burden: health and structural. At the Parliamentary Breakfast by Gilead Sciences, experts from politics, science, healthcare, and self-help—including our Chair of the…