Your support enables us to promote research
– so that medical progress reaches everyone
Donate & get involved
– so that medical progress reaches everyone
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...
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
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…
Events
9th Rare Disease Symposium on 20 June 2025: Precision Medicine for Rare Diseases
On Friday, 20 June 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…
Events
Achieving more together: Women’s Network for Rare Diseases
On 9 January 2025, a group of committed women came together at the Berlin Institute of Health @ Charité (BIH) to officially launch the Women in Rare Diseases network -…
Events
Register now: Rare Diseases Run 2025 – the virtual charity run enters a new round
Run around the rarest day of the year for rare diseases - that's what the Rare Diseases Run invites you to do, starting for the fourth time in 2025. What…
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…
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.
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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