News

Augsburg Rare Disease Day

"There are some who are in darkness And the others are in light..."

At the "Rare Disease Day" of the Augsburg Center for Rare Diseases, Eva Luise Köhler thanked the team around Dr. Desirée Dunstheimer for their dedicated work and appealed to the guests in the hall: "Let's continue to fight together for the interests of the rare!"

INTERVIEW

"There is a lack of role models and research funding"

Im Interview mit dem 'themenbote medizin' stellt Sanna Börgel, Geschäftsführerin der Alliance4Rare gGmbH, die Initiative der Eva Luise und Horst Köhler Stiftung vor und erläutert, wie das zivilgesellschaftliche Bündnis ein visionäres Versorgungs- und Forschungsnetzwerk für Seltene Erkrankungen auf den Weg bringen und so die Entwicklung moderner Therapieansätze vorantreiben will.

PATIENT STORY

When cold paralyzes the body - Living with rare muscle disease

Matthias suffers from the so-called Eulenburg paramyotonia congenita - a hereditary sodium channel disease. Only one in 180,000 people in Germany is affected. At low temperatures, his muscles stiffen within minutes. For a long time, patients like him were helpless facing their fate. But then a team of researchers made a groundbreaking discovery.

Greeting and appeal

Rare must not be equated with insignificant!

In her welcoming address at the Tagesspiegel Patient Dialogue Forum, Eva Luise Köhler emphasized the great importance of rapid diagnosis for patients with rare diseases and stressed the need for digitization and consolidation of data for precision medicine.

NATIONAL REGISTER FOR RARE DISEASES - NARSE

"A decision with foresight"

The Innovation Committee at the Federal Joint Committee (G-BA) is funding the FAIR4Rare project as one of 32 new projects in the field of health services research. It supports the accompanying evaluation of the development process for an open National Registry for Rare Diseases (NARSE).

Review 6th Rare Disease Symposium

Translational medicine for rare diseases - from buzzword to reality

How does basic scientific knowledge become medical progress? What is necessary for patients to benefit quickly from research results? The Eva Luise and Horst Köhler Foundation for People with Rare Diseases invited participants to the 6th Rare Disease Symposium in Berlin on June 13 and 14, 2022, to discuss these and other questions related to translational medicine.

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Alliance4Rare

gemeinsam Zukunft schaffen

Film project by Britta Wauer

Showing face for more research on rare diseases

In the midst of the pandemic, filmmaker Britta Wauer portrayed companions and supporters of our foundation's work. In twelve episodes, the Grimme Award winner explores what drives people who work in research and science, in treatment rooms, meeting rooms or at their desks at home to ensure that (their) children with rare diseases can hope for urgently needed therapies.

Zur Filmübersicht

Event notice

18.01.2023

Information event Alström syndrome

Die Alström Initiative gestaltet gemeinsam mit dem neu gegründeten Verein Alström Syndrom e.V. die erste Veranstaltung im Rahmen der Kampagne „Seltene Erkrankungen Bayern“ und lädt herzlich ein

SOCIAL MEDIA

13.01.2023

Social media presence

Wir sind nun auch auf Instagram und LinkedIn präsent und freuen uns, wenn Sie unsere Arbeit auch auf diesen Kanälen begleiten.

RESEARCH AWARD 2015 - UPDATE

04.01.2023

When cilia remain motionless: Researcher identifies 40 genetic defects

The Eva Luise Köhler Research Award has been granted annually since 2008 to promote research into rare diseases. The awarded money of €50,000 each has already enabled more than a dozen innovative research projects to be launched. The 2015 award winner, Prof. Dr. Heymut Omran, told journalist Sandra Arens how his research in the field of Primary Ciliary Dyskinesia has developed since he received the award.

Rare diseases Bavaria

13.12.2022

"Rare disease patients are not alone!"

Unter der Schirmherrschaft von Eva Luise Köhler fiel am 8. Dezember 2022 in Freising der Startschuss für die Kampagne „Seltene Erkrankungen Bayern“. Ziel der von MdB Erich Irlstorfer angestoßenen Initiative ist, mit vielen verschiedenen Aktionen und Veranstaltungen im Jahr 2023 den Seltenen Erkrankungen Gehör zu verschaffen und auf die Situation der Betroffenen aufmerksam zu machen.

CORD-MI Symposium 2022

05.12.2022

Germany must catch up to act as a strong partner

"Digital Collaboration for Diagnosis and Therapy in the Field of Rare Diseases" - this was the title of the symposium of the Collaboration on Rare Diseases of the Medical Informatics Initiative (CORD-MI) held at the Kaiserin-Friedrich Haus in Berlin on December 1 and 2, 2022. Among the speakers was Prof. Dr. Annette Grüters-Kieslich, Chairwoman of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases.

ALLIANCE4RARE: CLINICIAN SCIENTISTS IN PORTRAIT

11.11.2022

Dr. Nina-Christine Knopf, Gustav-Carus Universitätsklinik Dresden

In order to provide research-based pediatricians with the necessary freedom for high-level scientific work during their qualification, the research network Alliance4Rare, initiated by the Eva Luise and Horst Köhler Foundation, focuses among other things on structured clinician scientist programs. Some of the fellows who have recently started their work introduce themselves and their projects.

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