Die Stiftung - Über uns
THE FOUNDATION
Solidarity with
the orphans of medicine
Every person has the same right to health. That 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.
Alliance4Rare
gemeinsam Zukunft schaffen
(Eva Luise and former Federal President Prof. Dr. Horst Köhler with daughter Dr. Ulrike Köhler in Berlin in 2021)
When the idea for this commitment was born more than 15 years ago, we knew many things from our own experience:
- The desperate search for answers.
- The odyssey from clinic to clinic over many years.
- The helplessness in the face of a lack of treatment options.
The fact that a lot has developed in the right direction since then encourages us in our work, but there is still much to be done: In addition to the further expansion of specialized care structures, the orphans of medicine now need, above all, a bold research offensive in order to participate in the immense possibilities of modern medicine.
Medical progress is on our side. Let us work together to ensure that people with diseases that have not yet been adequately researched can also hope for the medicine of tomorrow!
Shaping the future together that is our commitment. That is our promise.
Medical progress is on our side. Let us work together to ensure that people with diseases that have not yet been adequately researched can also hope for the medicine of tomorrow!
Shaping the future together that is our commitment. That is our promise.
MISSION AND GOALS
Shaping the future together
Whether a child or an adult, no one should feel left alone with a serious, often chronic and life-shortening disease. However, there are often no adequate treatment options for patients with rare diseases. We want to change that!
The Eva Luise and Horst Köhler Foundation therefore focuses on three major challenges:
The Eva Luise and Horst Köhler Foundation therefore focuses on three major challenges:
1.
SIMPLIFIED ACCESS TO MODERN DIAGNOSTICS
SIMPLIFIED ACCESS TO MODERN DIAGNOSTICS
The use of powerful genetic and molecular diagnostic methods can often reveal the causes of diseases. We are committed to making this 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
ACCELERATING THE DEVELOPMENT OF SPECIFIC THERAPIES
For the vast majority of rare diseases, there are currently no effective treatment options. We therefore support research into disease mechanisms and the rapid translation of promising therapeutic approaches - so that patients with rare diseases can hope for specific and effective drugs.
3.
SET UP A SPECIALIZED INFRASTRUCTURE FOR RESEARCH AND CARE
SET UP A SPECIALIZED INFRASTRUCTURE FOR RESEARCH AND CARE
People with rare diseases often experience a years-long, stressful odyssey in their search for adequate medical treatment. We support the development of an integrated research and care network for rare diseases – to help these patients faster and better.
Family Köhler
The Köhlers have many connections to rare diseases, including personal ones. Eva Luise Köhler held 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 former passionate teacher is patron of the Alliance of Chronic Rare Diseases (ACHSE e.V.). In many encounters, Eva Luise Köhler has experienced what it means for people when they are affected by a rare disease – the worries and despair that arise when the newborn child, the partner, the wife or the best friend gets ill and a stressful odyssey from clinic to clinic begins in search of answers.
But Eva Luise Köhler has also experienced what it means when a diagnosis is finally found, when there is hope for relief and sometimes even for 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. From the beginning, their daughter Ulrike Kristina Köhler has also been involved in the foundation's advisory board for the interests of people with rare diseases.
Eva Luise and former Federal President Horst Köhler live in Berlin and the Chiemgau. Region. They have been married since 1969 and have two grown-up children and four grandchildren.
Among other things, the former passionate teacher is patron of the Alliance of Chronic Rare Diseases (ACHSE e.V.). In many encounters, Eva Luise Köhler has experienced what it means for people when they are affected by a rare disease – the worries and despair that arise when the newborn child, the partner, the wife or the best friend gets ill and a stressful odyssey from clinic to clinic begins in search of answers.
But Eva Luise Köhler has also experienced what it means when a diagnosis is finally found, when there is hope for relief and sometimes even for 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. From the beginning, their daughter Ulrike Kristina Köhler has also been involved in the foundation's advisory board for the interests of people with rare diseases.
Eva Luise and former Federal President Horst Köhler live in Berlin and the Chiemgau. Region. They have been married since 1969 and have two grown-up children and four grandchildren.
Official photo of the Köhlers during the term of office of the Federal President. Photo: Office of the Federal President
DID YOU KNOW THAT
... it takes an average of 5 years for patients with rare diseases to receive a correct diagnosis?
