Eva Luise & Horst Köhler Stiftung

The Eva Luise und Horst Köhler Stiftung, founded in March 2006 by Eva Luise and former Federal President Horst Köhler, is dedicated to improving the medical care of people with rare diseases. The foundation arose from the Köhlers' personal experience with the challenges posed by such diseases, such as the desperate search for answers, the years-long odyssey from clinic to clinic, and the helplessness in the face of a lack of treatment options[1].

• Research Promotion: The foundation specifically promotes research on rare diseases, particularly through the investigation of disease mechanisms and the development of specific therapies. An important aspect is the Alliance4Rare, a research initiative focused on pediatric research in Germany[3].
• Networking: The foundation builds and supports an integrated research and care network for rare diseases to help those affected more quickly and effectively. This includes partnerships with organizations such as the Alliance of Chronic Rare Diseases (ACHSE e.V.) and the National Register for Rare Diseases (NARSE)[1][2].
• Diagnostics and Therapy: The foundation advocates for modern genetic and molecular diagnostic methods to become the gold standard for diagnosing rare diseases. Additionally, it promotes the development of new, effective therapies and the translation of promising therapeutic approaches into practice[1].

The main mission of the Eva Luise und Horst Köhler Stiftung is to ensure that every person has the same right to health. The foundation is deeply committed to better medical care for children, adolescents, and adults with rare diseases. The values of the foundation include promoting research, creating networks, and improving care to alleviate the suffering of those affected and to provide hope for relief and healing[1][3].