TARGETED FUNDING

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

Alliance4Rare

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.

Alliance4Rare

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.

MORE ABOUT THE ALLIANCE4RARE

Eva Luise Köhler Research Award for Rare Diseases

Research on rare diseases often faces major institutional hurdles - but is rarely in the spotlight.

With the Eva Luise Köhler Research Award, we create publicity for this important topic and support the development of the research field. The prize money of 50,000 euros provides start-up funding for research on disease mechanisms and new therapeutic approaches for rare diseases.

MORE ABOUT THE RESEARCH AWARD

Eva Luise Köhler schaut gemeinsam mit dem Forschungspreisträger 2015 und einem betroffenen Mädchen in die Kamera.

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.

TO THE SYMPOSIA

National Registry for Rare Diseases (NARSE)

Many rare diseases are almost unexplored. Together with the partners of our think tank, we initiate the implementation of a sustainable patient registry for rare diseases. In this way, we will provide access to structured data on possible manifestations and courses of disease and create the basic prerequisite for targeted research and evidence-based medical care.

TO THE NARSE

Drei Ärzte schauen gemeinsam in einen Laptop.

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.

TO THE THINK TANK