Around four million people in Germany live with a rare or undiagnosed disease. Possible progress and the necessary political, infrastructural, and scientific steps were the focus of the Parliamentary Evening, to which FUSE Hessen e.V. together with our foundation invited guests on November 20, 2025, at the Hessian State Representation in Berlin.
The event was moderated by Prof. Dr. Silke Kauferstein, FUSE board member and head of the Center for Sudden Cardiac Death and Cardiogenetics at University Hospital Frankfurt am Main. Right at the outset, she made it clear that rare diseases are not a marginal issue: “Statistically speaking, in every second row of this room, there is a person affected,” she said – and posed the guiding question of the evening: “How can we ensure that no one is overlooked?”
Political drive for rare diseases
Minister-President Boris Rhein welcomed guests as host at the Hessian State Representation and emphasized our shared responsibility toward people with rare diseases. “Behind the numbers are destinies and immense suffering,” he said. “It is a matter of responsibility and ultimately humanity that we give people with rare diseases and their families hope and confidence.” Rhein highlighted the importance of strong partnerships and praised the work of FUSE e.V. far beyond Hesse. The cooperation with the Eva Luise and Horst Köhler Foundation is, he said, a striking example “of how valuable strong networks are.” The key, he stressed, is collaboration between governmental and civil society actors: “We must pool our strengths so that a life without suffering can become reality for many. This is also a personal concern of mine.”
Federal Minister of Health Nina Warken picked up on these points: “I am very happy to be here today – this appointment was important to me.” Too many people are still far from any treatment option; that is why more research, reliable framework conditions, and modern use of health data are needed. “It makes a huge difference whether you can use proven paths in the health system or set out into completely new territory,” emphasized the Minister. Research into rare diseases is not only essential, but often exemplary and paves the way to understanding more common conditions. She concluded: “The Federal Ministry of Health will do everything it can to stand by your side and open up new perspectives.”
New perspectives and digital opportunities
Prof. Dr. T. O. F. Wagner, FUSE board member, and Prof. Ludwig Georg Braun, former chairman of B. Braun Melsungen, also highlighted the importance of networking, knowledge transfer, and innovative approaches. “There is always someone who knows more than you do. That should not be ignored, but used,” said Wagner, pointing to the potential of AI-based applications that “can significantly shorten the agonizing wait for a diagnosis.”
Braun advocated for a fundamental change of perspective within the healthcare system: “Rarity is special – and something special deserves attention.” He described the ongoing hurdles for those affected – from non-specific symptoms and genetic complexity to fragmented data and knowledge gaps in care. But he remained optimistic: Digital innovation, European cooperation, and new structures are opening up real opportunities for progress. His conclusion: “The prerequisites for real progress have never been better. We have every reason to be optimistic.”
Life’s work in focus: Honoring Eva Luise Köhler
The central moment of the evening was the presentation of the Lifetime Achievement Award in the field of rare and undiagnosed diseases to Eva Luise Köhler. During a deeply personal tribute, Prof. Dr. Annette Grüters-Kieslich, chairwoman of our foundation, honored the decades of dedication of the board’s chairwoman: her tireless advocacy for those affected, her unceasing bridge-building between care, research, and politics, and the profound impulses she has given to the rare disease community. She summed up what sets Köhler’s work apart: “Your warmth and your attitude make possible what actually seems impossible.”
In her speech of thanks, Eva Luise Köhler was visibly moved – and characteristically modest: “In Swabian, ‘nix g’sagt genügt gelobt’ (‘nothing said is enough praise’). So, all this praise was almost uncanny to me, but I am very grateful for it.” At the same time, she resolutely looked to the future: “What we have achieved must now be consolidated and expanded. We need to secure center funding and stabilize NAMSE. We need cooperation across borders – and we should start with the federal states.”
An evening that shows: We can achieve more together
The discussions, analysis, and political messages of the evening made one thing clear: Rare diseases are a shared societal responsibility that demands networking across federal and sectoral boundaries. The event brought together people willing to take on this responsibility and take the next steps forward together. We are looking forward to it!
Impressions from the event
Photos: Felix Zahn/photothek.de
