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Events
“Five years to a diagnosis is five years too many”
At the 10th Political Expert Talk on Rare Disease Day, to which Takeda invited participants to Berlin on March 2, 2026, a key question took center stage: How can diagnosis…
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Events
Rare Diseases as a Benchmark for True Patient Orientation
The true measure of patient orientation in our healthcare system is revealed where care becomes especially complex. At the annual reception of the Federal Government’s Patient Representative, Prof. Dr. Annette…
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Events
Families with Rare Diseases Need More Than Just Medical Solutions
Rare diseases don't stop at the doctor's door: they impact education, participation, and balancing care and work. In a personal exchange between Eva Luise Köhler, Prof. Dr. Annette Grüters-Kieslich, and…
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Events
Needs-based care for women with rare diseases: Parliamentary breakfast sets impulses
Women with rare diseases often face a double burden: health and structural. At the Parliamentary Breakfast by Gilead Sciences, experts from politics, science, healthcare, and self-help—including our Chair of the…
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Events
Parliamentary Expert Dialogue with change4RARE: “How Must AMNOG Evolve for Rare Diseases?”
At the expert dialogue of the change4RARE initiative, Prof. Dr. Annette Grüters-Kieslich and representatives from politics, science, medicine, and self-help discussed necessary changes to the German Medicines Market Reorganization Act…
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Events
“Your warmth makes the impossible possible” – Tribute to Eva Luise Köhler
On November 20, 2025, Eva Luise Köhler was honored with the Lifetime Achievement Award at the Parliamentary Evening on Rare Diseases by FUSE e. V. The tribute by Prof. Dr.
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Events
An evening of dialogue, networking, and special recognition: During the Parliamentary Evening on Rare Diseases hosted by FUSE e.V., Eva Luise Köhler was honored for her life's work on November…
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Events
Taking Responsibility Together – Parliamentary Breakfast on the Care of People with Rare Diseases
“I wish us the courage for new alliances and the firm will to continue decisively together.” With this appeal, Eva Luise Köhler opened the Parliamentary Breakfast on November 13, 2025,…
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Events
Register now for the Rare Diseases Run 2026
From February 23 to March 1, 2026, it's time again: Run, Walk or Roll for people with rare diseases. For the fifth time, the Rare Diseases Run is getting people…
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Events
Foundation Forum Gene and Cell Therapies: How Can Tomorrow’s Medicine Remain Affordable?
Gene and cell therapies open up new perspectives for people with rare diseases. But how can we achieve fair, sustainable care for everyone? This was the central topic of the…
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Events
“20 Years of Voice for the Rare” – Eva Luise Köhler at NAKSE 2025
For over two decades, Eva Luise Köhler has advocated for people living with rare diseases, also as patron of ACHSE e.V. At the National Conference on Rare Diseases NAKSE, held…
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Events
Federal President’s Citizens’ Festival: Two Days for More Visibility of Rare Diseases
Our foundation, together with the NCL Foundation, participated as a partner at the Federal President's Citizens' Festival in the park of Schloss Bellevue on September 12 and 13, 2025 –…