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The Eva Luise and Horst Köhler Foundation

Solidarity with the orphans of medicine

Everyone has the same right to health. This is why the Eva Luise and Horst Köhler Foundation has been working since 2006 to improve medical care for people with rare diseases through targeted research funding and networking.

When the idea for this commitment was born almost 20 years ago, we knew many things from our own experience:

  • the desperate search for answers
  • the many years-long odyssey from clinic to clinic
  • helplessness in the face of a lack of treatment options

The fact that much has developed in the right direction since then encourages us in our work, but there is still a lot to do: The orphans of medicine need a bold research offensive in order to participate in the immense possibilities of modern medicine. Medical progress is on our side. Let’s work together to ensure that people with diseases that have not yet been adequately researched can also hope for the medicine of tomorrow!

Creating the future together – that is our commitment.
That is our promise.

Mission & Goals

Creating a future together

Regardless of whether they are children or adults – no one should feel left alone with a serious, often chronic and life-shortening disease. Nevertheless, there are currently often insufficient treatment options for people with a rare disease. We want to change that!

The Eva Luise and Horst Köhler Foundation is therefore focusing on three main challenges:

  • 1. Improved access to modern diagnostics

    The use of powerful genetic and molecular diagnostic procedures can often reveal the causes of diseases. We are committed to ensuring that this becomes the gold standard for patients without a confirmed diagnosis – so that targeted treatment can begin in good time.

  • 2.Accelerating the development of specific therapies

    There are currently no effective treatment options for the vast majority of rare diseases. We therefore promote research into disease mechanisms and the rapid translation of promising therapeutic approaches – so that those affected can hope for specific and effective medication.

  • 3. Development of a specialized infrastructure for research and care

    People with rare diseases often experience a long, stressful odyssey in their search for adequate medical treatment. We support the establishment of an integrated research and care network for rare diseases – so that those affected can be helped faster and more effectively.

The Köhler family – Standing reliably by the side of people with rare diseases

The Köhlers have many personal connections to rare diseases. Eva Luise Köhler took on various honorary positions during her husband Prof. Dr. Horst Köhler’s term as President of the Federal Republic of Germany from 2004 to 2010. Among other things, the passionate former teacher is patron of the Alliance of Chronic Rare Diseases (ACHSE e.V.). In numerous encounters, Eva Luise Köhler has experienced first-hand what it means for people when they are affected by a rare disease – the worry and despair it brings when a newborn child, partner, wife or best friend falls ill and begins a stressful odyssey from clinic to clinic in search of answers.

But she has also experienced how it feels when a diagnosis can finally be made and there is hope for relief and sometimes even a cure. Based on these experiences, the Köhlers decided to actively promote research in the field of rare diseases themselves. In March 2006, they therefore initiated the establishment of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases. In addition to her scientific career, Ulrike Kristina Köhler has also been involved in the foundation’s advisory board for people with rare diseases from the very beginning.

Eva Luise and former Federal President Horst Köhler live in Berlin and Chiemgau. They have been married since 1969 and have two grown-up children and four grandchildren.

Did you know, that...

... it takes an average of 5 years for patients with rare diseases to receive an accurate diagnosis?

Help the orphans of medicine!

ELHKS uses your donations in a targeted manner – so that medical progress reaches everyone.


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