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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!
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!
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
Mourning for former Federal President Prof Dr Horst Köhler
It is with great sadness and gratitude that the Eva Luise and Horst Köhler Foundation for People with Rare Diseases bids farewell to the former President of the Federal Republic…
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Research
Call for applications for the 18th Eva Luise Köhler Research Award for Rare Diseases
In order to improve medical care for the "orphans of medicine", the Eva Luise and Horst Köhler Foundation, in cooperation with ACHSE e. V., has been awarding a research award…
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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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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…
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Alliance4Rare
Junior Clinician Scientist: Dr. Klara Brüning, Charité – Universitätsmedizin Berlin
The Alliance4Rare research network not only invests in research programs, but also in urgently needed young scientists through clinician/medical scientist programs. Here, Dr. Klara Brüning/ Charité - Universitätsmedizin Berlin introduces…
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Information & Opinion
Key demands for improving care for people with rare diseases
Concerned about the future of care for people with rare diseases, several position papers on the situation of rare disease patients in the German healthcare system have been produced in…
Help the orphans of medicine!
ELHKS uses your donations in a targeted manner – so that medical progress reaches everyone.
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