Research is the
first step toward a cure

"We are experiencing a turning point in medicine. Through consistent research funding, we can save seriously ill children from death or lifelong disability."
Annette Grüters-Kieslich mit Baby auf dem Arm, beide lachen
Prof. Dr. med. Annette Grüters-Kieslich
Chairwoman of the Eva Luise and Horst Köhler Foundation
gemeinsam Zukunft schaffen
"About every 20th newborn is born with a rare disease. We doctors are often "empty handed" and can only alleviate the symptoms, if anything at all. Many of these children will never be able to lead an independent life. The suffering of the concerned families still touches me deeply, even after 40 years in the profession.

What gives hope is the enormous gain in knowledge, this real turning point in medicine that we are currently experiencing: It provides us with precise methods and procedures that enable early diagnosis and the development of highly effective causal therapies.

This is a historic opportunity that puts us in a position of responsibility to act swiftly and decisively. So that everyone can participate in medical progress."
How we help
Eine Forscherin holt Proben aus einem Trockeneis-Behälter.
Seriously ill children at risk of early death or lifelong disability need access to modern and promising therapies. The Alliance4Rare connects the expertise of research-strong university children's hospitals and pushes forward a consensual research strategy for rare diseases. The result: more efficient processes and greater capacity to effectively address the enormous needs. 
Gruppenarbeit, man sieht verschiedene Tische mit Menschen, die Unterlagen lesen
Rare Disease Symposia
When it comes to diseases with only a very small number of cases, all relevant players must pull in the same direction. That is why our Rare Disease Symposia promote knowledge transfer and close interdisciplinary collaboration between clinicians and researchers, with the involvement of patient organisations, authorities and industry partners. 
Spielfiguren von Playmobil
Think Tank "Future Workshop on Rare Diseases"
The cross-institutional Rare Diseases Think Tank drives agenda setting in the field of rare diseases in order to generate attention for relevant topics in the political context. The well-being of patients is the guiding principle for all discussions and recommendations for action. um dabei zeitnah Aufmerksamkeit für relevante Themen im politischen Kontext zu generieren. Als Richtschnur aller Diskussionen und Handlungsempfehlungen dient dabei das Wohl der Patient:innen.

Help the 
orphans of medicine!

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Eva Luise and Horst Köhler Foundation for
People with Rare Diseases
Sparkasse KölnBonn
IBAN DE83 3705 0198 1901 4480 17
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