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Events
Achieving more together: Women’s Network for Rare Diseases
On 9 January 2025, a group of committed women came together at the Berlin Institute of Health @ Charité (BIH) to officially launch the Women in Rare Diseases network -…
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Alliance4Rare
Clinician Scientist: Dr. Julia Körholz, University Hospital Dresden
The Alliance4Rare research network not only invests in research projects, but also in urgently needed young scientists through clinician/medical scientist programs. Lern more about Dr. Julia Körholz, University Hospital Dresden,…
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Events
Register now: Rare Diseases Run 2025 – the virtual charity run enters a new round
Run around the rarest day of the year for rare diseases - that's what the Rare Diseases Run invites you to do, starting for the fourth time in 2025. What…
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Events
Save the date: Rare Disease Symposium and Ceremony of the Eva Luise Köhler Research Award 2025
On Friday, June 20, 2025, the 9th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation will take place in Berlin. The focus will be on precision medicine…
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Information & Opinion
Our new activity report is out
Find out how we are working to increase research and improve care for people living with rare diseases through funding projects, events and initiatives.
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Events
“We don’t have a problem of knowledge, we have a problem of implementation!”
This clear call was the focus of Prof. Dr. Annette Grüters-Kieslich's presentation at the event "Pendulum - Patient-Centricity and Future-Oriented Care for Rare Diseases" on November 26 in Berlin. The…
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Information & Opinion
Rare diseases affect millions of people in Germany and their families - an enormous challenge for our healthcare system. At the same time, technological advances in diagnostics, therapies and digitalization…
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Research
Growing ‘scavenger cells’ and saving lives: New therapeutic approach for severe lung disease
The Eva Luise Köhler Research Award has been presented annually since 2008 to promote research into rare diseases. The award money of €50,000 has already enabled more than a dozen…
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Alliance4Rare
Alliance4Rare funding: Newborn genetic screening pilot project launched
Around five million people in Germany are living with rare, mostly genetic diseases. Many of these diseases could be diagnosed in newborn babies - but the diagnosis is often made…
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Alliance4Rare
Hope for children with rare immune disorders: Alliance4Rare funds innovative research
Children affected by rare immune disorders often suffer from severe chronic inflammation and autoimmune diseases that can severely limit their lives. But there is hope: funded by Alliance4Rare, the research…
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Veranstaltung
Roundtable: Why the EU pharmaceutical package is crucial for rare diseases
At the virtual roundtable organised by the Change4Rare initiative, Annette Grüters-Kieslich took a clear stance: "The needs of the more than 30 million people with rare and ultra-rare diseases must…
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Veranstaltung
At the invitation of Erich Irlstorfer, Member of the German Parliament, Prof Dr Annette Grüters-Kieslich and Geske Wehr (ACHSE e.V.) joined numerous interested guests in the German Bundestag to advocate…