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Eva Luise und Horst Köhler Stiftung: Commitment to People with Rare Diseases

About Us

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].

Key Products and Services

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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].

Main Mission and Values

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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].

Sustainability Goals and Initiatives

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National Register for Rare Diseases (NARSE): The foundation initiated the NARSE to collect epidemiological data on rare diseases in Germany, connect those affected, and improve care through new therapies and studies. The register aims to provide a basis for effective research and the development of new treatment methods[2].
Alliance4Rare: This research initiative aims to create a future model for pediatric research in Germany. It includes projects such as genetic newborn screening and the promotion of innovative research on rare immune dysregulations[3].
Eva Luise Köhler Research Award: The foundation annually awards the Eva Luise Köhler Research Award to recognize and promote outstanding research on rare diseases. This award supports scientists in developing new therapeutic approaches, such as for cystic fibrosis[4].

The Eva Luise und Horst Köhler Stiftung works tirelessly to enable medical progress for all and to significantly improve the quality of life for people with rare diseases. Through its comprehensive initiatives and partnerships, the foundation makes an important contribution to healthcare and research in this field.

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