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– so that medical progress reaches everyone
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The Eva Luise and Horst Köhler Foundation
Building the future together
Rare diseases primarily affect the most vulnerable in our society. Every year, at least 1,500 children die from a rare disease in Germany alone. However, it is only the clinical picture that is rare: in Germany alone, at least 4 million people are affected by a rare disease. Due to a lack of research, there is a lack of effective treatment approaches and medication.
The Eva Luise and Horst Köhler Foundation wants to change this through targeted research funding, networking, and public relations work. We promote research into rare diseases and make targeted investments in the structures required to achieve these goals. As the initiator of the Alliance4Rare research initiative, we are shaping a future model for pediatric research in Germany together with partners from research and civil society. With your help, we are making the ‘medicine of tomorrow’ a reality and ensuring that medical progress reaches everyone!
Christmas 2025
In memoriam Bundespräsident a.D. Horst Köhler
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The Foundation
About us
Since 2006, the people behind the Eva Luise and Horst Köhler Foundation have been deeply committed to improving medical care for children, young people and adults with rare diseases.
Research
How we help
Research and patient care must go hand in hand when it comes to rare diseases. We invest in the necessary structures, networks and projects so that those affected can be helped as quickly as possible.
Rare diseases
Why we help
Rare are plenty. Our efforts give people with rare diseases hope for a healthier future and ultimately benefit everyone. After all, research into rare diseases can also revolutionize the “medicine of tomorrow”.
Donations
How you can help
People suffering from insufficiently researched diseases need help quickly. We are taking action. Support us with your donation in our research offensive for rare diseases!
Without the funding from the Alliance4Rare, my research project would not be possible in everyday university life.
I would like to see more attention paid to researching and treating rare diseases, with the aim of giving those affected a chance for a better life.
I had just started a position at the largest children’s hospital in Switzerland. I came back to Berlin for the opportunity to combine excellent research and patient care.
Herzenswünsche e.V. supports the Alliance4Rare because hope for more effective therapies is probably the greatest wish of all for many families with seriously ill children.
Everyone deserves a chance to live a normal and happy life. By supporting the Alliance4Rare, researchers like me can hope to give patients with rare diseases a better future.
We are committed to promoting highly trained pediatricians through targeted support for young talent – they are the future of medicine and hope for many families in Berlin and around the world.
Alliance4Rare offers me the unique opportunity to devote time to patients with rare diseases alongside my specialist work in order to speed up diagnosis.
It is impossible to ignore the fate of the orphans of medicine. Especially not when you realize how much can and must still be achieved through research.
Latest News
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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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Dates
Save the Date: 10th Rare Disease Symposium & 18th Eva Luise Köhler Research Award Ceremony
On Friday, April 17, 2026, we warmly invite you to the 10th Rare Disease Symposium and the 18th Eva Luise Köhler Research Award Ceremony for Rare Diseases in Berlin. Please…
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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
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
Federal President’s Citizens’ Festival: Two Days for More Visibility of Rare Diseases
Our foundation, together with the NCL Foundation, participated as a partner at the Federal President's Citizens' Festival in the park of Schloss Bellevue on September 12 and 13, 2025 –…
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Dates
Precision medicine offers new perspectives for people living with rare diseases. But how can it be implemented wisely and sustainably for the future? This was the central question explored at…
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Events
Award for a pioneering project by Prof. Dr. Didier Stainier, Dr. Christopher Dooley, and Lara Falcucci (Max Planck Institute for Heart and Lung Research) on the therapeutic potential of transcriptional…
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Research
Strong, visible, audible – how Greta and Larissa break the silence with NF2
For Greta Brenken and Larissa Käfer, living with NF2 is a lifelong challenge. This rare genetic disease causes benign tumours to grow throughout the nervous system. NF2 patients struggle with…
Help the orphans of medicine!
ELHKS uses your donations in a targeted manner – so that medical progress reaches everyone.
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