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Events
Award for a pioneering project by Prof. Dr. Didier Stainier, Dr. Christopher Dooley, and Lara Falcucci (Max Planck Institute for Heart and Lung Research) on the therapeutic potential of transcriptional…
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Research
Call for applications for the 18th Eva Luise Köhler Research Award for Rare Diseases
In order to improve medical care for the "orphans of medicine", the Eva Luise and Horst Köhler Foundation, in cooperation with ACHSE e. V., has been awarding a research award…
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Dates
Precision medicine offers new perspectives for people living with rare diseases. But how can it be implemented wisely and sustainably for the future? This was the central question explored at…
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Dates
9. Rare Disease Symposium – Session 1: Case Study Neuronale Ceroid-Lipofuszinose (NCL)
The opening session of the 9th Rare Disease Symposium on June 20, 2025, focused on Neuronal Ceroid Lipofuscinosis (NCL), a rare neurodegenerative disorder of childhood that exemplifies both the opportunities…
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Dates
9th Rare Disease Symposium – Session 2: Unlocking the Power of Data in Rare Diseases
Precision medicine relies on data — but not at any cost. The second session of the 9th Rare Disease Symposium on June 20, 2025, focused on the responsible use of…
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Dates
The third session of the 9th Rare Disease Symposium on June 20, 2025, focused on the scientific and technological foundations of precision medicine from diagnostic methods to innovative therapeutic approaches.
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Dates
To conclude the 9th Rare Disease Symposium on June 20, 2025, Prof. Dr. Claudia Bozzaro (University of Münster) turned the focus to the ethical foundations of precision medicine posing a…
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Dates
CME Training: “Rare Diseases and Orthopaedics”
X-linked hypophosphatemia, hypophosphatasia, and osteogenesis imperfecta—three rare diseases—will be the focus of a live webinar in the OrthoTrauma Live series on the STREAMED UP education platform on Tuesday, July 10,…
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Events
On 20 June 2025, the Eva Luise and Horst Köhler Foundation will hold its ninth Rare Disease Symposium. Once again, Berlin will be the meeting place for international experts, patients…
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Research
Strong, visible, audible – how Greta and Larissa break the silence with NF2
For Greta Brenken and Larissa Käfer, living with NF2 is a lifelong challenge. This rare genetic disease causes benign tumours to grow throughout the nervous system. NF2 patients struggle with…
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Alliance4Rare
Junior Clinician Scientist: Dr. Klara Brüning, Charité – Universitätsmedizin Berlin
The Alliance4Rare research network not only invests in research programs, but also in urgently needed young scientists through clinician/medical scientist programs. Here, Dr. Klara Brüning/ Charité - Universitätsmedizin Berlin introduces…
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Information & Opinion
In Germany, four million people live with a rare disease — enough to fill the largest football stadium in Dortmund 50 times. However, unlike in football, those living with rare…