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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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More Information
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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Dates
Save the Date: 11th Rare Disease Symposium and 19th Eva Luise Köhler Research Prize Award Ceremony
On Friday, April 23, 2027, we warmly invite you to the 11th Rare Disease Symposium and the 19th Eva Luise Köhler Research Prize Award Ceremony for Rare Diseases in Berlin.
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Events
Making Narcolepsy Visible: Improving Diagnosis, Strengthening Care
Narcolepsy is a rare disease that can profoundly change daily life. Sleep attacks, severe daytime sleepiness, and cataplexy affect work, family, and social life. How can we improve diagnosis and…
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Research
Research Award Follow-up: New Perspectives on Duchenne Muscular Dystrophy
When Professor Dr. Didier Stainier, Dr. Christopher Dooley, and Dr. Lara Falcucci received the 17th Eva Luise Köhler Research Award in June 2025, their focus was a promising idea: Can…
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A4R – Alliance4Rare
Junior Clinician Scientists in Portrait: Dr. Antje Bjelde, Charité – Universitätsmedizin Berlin
The Alliance4Rare research network not only invests in research programs, but through Clinician Scientist Programs, also in the urgently needed next generation of scientists. Here, Dr. Antje Bjelde/ Charité –…
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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
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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Information & Opinion
Living with Sanfilippo: Why Research Means Hope for Theresa and Many Families
Rare diseases present enormous challenges for affected families. Many conditions are hardly known, treatment options are limited, and the way to diagnosis, support, and research is often difficult. This also…
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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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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…
Help the orphans of medicine!
ELHKS uses your donations in a targeted manner – so that medical progress reaches everyone.
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