Author: Eva
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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
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…
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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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Research
Newborn Screening for MLD: Eva Luise Köhler Recognition Award for Dr. Lucia Laugwitz and Team
For their pioneering work in newborn screening for metachromatic leukodystrophy (MLD), the Eva Luise and Horst Köhler Foundation honors Dr. Lucia Laugwitz and her team at the University Hospital Tübingen…
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Research
18th Eva Luise Köhler Research Award for Rare Diseases goes to Dr. Arcangela Iuso
The 18th Eva Luise Köhler Research Award for Rare Diseases is awarded to Dr. Arcangela Iuso (Helmholtz Munich, Technical University of Munich). The award recognizes an innovative research project on…
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Information & Opinion
Rare Diseases in Primary Care: Good Management Requires Expertise
Joint press release by the Federal Government Commissioner for Patients' Affairs and the Eva Luise and Horst Köhler Foundation for People with Rare Diseases on Rare Disease Day 2026…
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Information & Opinion
Rare Diseases: National Recognition of Specialist Expert Centers Launches
Care for people with rare diseases is being structurally strengthened: With a nationwide recognition process, specialized centers will now be designated according to uniform quality standards. The aim is to…
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Dates
Zebra Participation Events colourUp4RARE
On International Rare Disease Day, the colourUp4RARE initiative draws attention to the situation of millions affected with nationwide zebra activities. Join in and show your visible support.
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Medical Trainings
CME Training “Gene and Cell Therapy Compact: From Research to Primary Care”
Gene and cell therapy is no longer medicine of the future—it has become a clinical reality. For general practitioners, foundational knowledge in this area is essential. This is where the…