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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
Register now: 10th Rare Disease Symposium on April 17, 2026
On Friday, April 17, 2026, the Eva Luise and Horst Köhler Foundation will host its 10th Rare Disease Symposium in Berlin under the title “Breaking Boundaries: Uniting People, Knowledge and…
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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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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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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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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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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
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…
Help the orphans of medicine!
ELHKS uses your donations in a targeted manner – so that medical progress reaches everyone.
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