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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!
Did you know, that...
... experts estimate that there are up to 10,000 rare diseases?
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!
Latest News
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Information & Opinion
Rare diseases affect millions of people in Germany and their families - an enormous challenge for our healthcare system. At the same time, technological advances in diagnostics, therapies and digitalization…
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Events
Save the date: Rare Disease Symposium and Ceremony of the Eva Luise Köhler Research Award 2025
On Friday, June 20, 2025, the 9th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation will take place in Berlin. The focus will be on precision medicine…
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Information & Opinion
Our new activity report is out
Find out how we are working to increase research and improve care for people living with rare diseases through funding projects, events and initiatives.
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Events
“We don’t have a problem of knowledge, we have a problem of implementation!”
This clear call was the focus of Prof. Dr. Annette Grüters-Kieslich's presentation at the event "Pendulum - Patient-Centricity and Future-Oriented Care for Rare Diseases" on November 26 in Berlin. The…
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Alliance4Rare
Alliance4Rare funding: Newborn genetic screening pilot project launched
Around five million people in Germany are living with rare, mostly genetic diseases. Many of these diseases could be diagnosed in newborn babies - but the diagnosis is often made…
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Alliance4Rare
Hope for children with rare immune disorders: Alliance4Rare funds innovative research
Children affected by rare immune disorders often suffer from severe chronic inflammation and autoimmune diseases that can severely limit their lives. But there is hope: funded by Alliance4Rare, the research…
Help the orphans of medicine!
ELHKS uses your donations in a targeted manner – so that medical progress reaches everyone.
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