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On our on behalf
Hope grows when we act together – Reflections at year’s end
The year 2025 moved and united us. We had to say goodbye but also saw how much hope arises when people support each other. In our Christmas letter, we look…
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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…
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Information & Opinion
“The best time to plant a tree was twenty years ago. The second best time is now.”
Twenty years ago, Horst Köhler spoke about responsibility, courage, and the opportunity to actively shape the future. His thoughts are more relevant today than ever. A reminder that offers guidance—especially…
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Dates
Save the date: On Friday, April 17, 2026, the 10th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation will take place in Berlin. We warmly invite you…
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Events
Parliamentary Expert Dialogue with change4RARE: “How Must AMNOG Evolve for Rare Diseases?”
At the expert dialogue of the change4RARE initiative, Prof. Dr. Annette Grüters-Kieslich and representatives from politics, science, medicine, and self-help discussed necessary changes to the German Medicines Market Reorganization Act…
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Events
“Your warmth makes the impossible possible” – Tribute to Eva Luise Köhler
On November 20, 2025, Eva Luise Köhler was honored with the Lifetime Achievement Award at the Parliamentary Evening on Rare Diseases by FUSE e. V. The tribute by Prof. Dr.
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Events
An evening of dialogue, networking, and special recognition: During the Parliamentary Evening on Rare Diseases hosted by FUSE e.V., Eva Luise Köhler was honored for her life's work on November…
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Information & Opinion
Statement on the Medical Register Law: What Now Matters for Rare Diseases
At the end of October, the Federal Ministry of Health presented a draft bill for a Medical Register Law—a key initiative for a modern, networked, and EU-compatible registry landscape. Together…
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Events
Taking Responsibility Together – Parliamentary Breakfast on the Care of People with Rare Diseases
“I wish us the courage for new alliances and the firm will to continue decisively together.” With this appeal, Eva Luise Köhler opened the Parliamentary Breakfast on November 13, 2025,…
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Events
Register now for the Rare Diseases Run 2026
From February 23 to March 1, 2026, it's time again: Run, Walk or Roll for people with rare diseases. For the fifth time, the Rare Diseases Run is getting people…
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A4R – Alliance4Rare
Biliary atresia: How do children live with this rare liver disease, and what is Alliance4Rare researching? Author Berit Hullmann, chairwoman of Leberkrankes Kind e.V., met with families and researchers. She…
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Events
Foundation Forum Gene and Cell Therapies: How Can Tomorrow’s Medicine Remain Affordable?
Gene and cell therapies open up new perspectives for people with rare diseases. But how can we achieve fair, sustainable care for everyone? This was the central topic of the…