Dear Federal Minister Warken,
Dear Prime Minister Raab,
Dear State Minister Stolz,
Dear Mrs. Raab-Rhein,
Dear Professor Wagner,
Dear Professor Kauferstein,
Ladies and Gentlemen,
and dear Eva Luise Köhler,
as many of you know, it is a great pleasure and honor for me every year to deliver the tribute speech for the laureates of the Eva Luise Köhler Research Award of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases. And for some time, I have felt that Eva Luise Köhler herself deserved to be recognized long ago for her lifetime achievement in support of people with rare diseases.
Certainly, as the wife of the Federal President, she has received numerous high honors—from the Order of Merit of the Republic of Poland to the Grand Cross of the Order of Merit of the Italian Republic, the Honorary Companion of Malta’s National Order of Merit, the Grand Cross of the Order of the Infante Dom Henrique, the Steiger Award, and the Order of Merit of the State of Baden-Württemberg. Yet an explicit honor for her dedication to rare diseases had been missing until now. I was all the more delighted that the association FUSE, founded in 2024 under the patronage of Mrs. Raab-Rhein, has now made this one of its very first acts. It is a special honor for me to deliver this laudation.
Dear Mrs. Raab-Rhein, dear Professor Kauferstein, dear Professor Wagner, and dear Mr. Schäfer: On behalf of our foundation, our heartfelt thanks.
There is no need to introduce Eva Luise Köhler.
As First Lady of the Federal Republic of Germany, together with her husband, former President Dr. Horst Köhler—whose absence we keenly feel—she not only represented our country with honor at home and abroad, but she also championed socially relevant causes with great commitment. She served as patron for organizations such as UNICEF, the Müttergenesungswerk, the German Children and Youth Foundation, and the Christoffel Mission for the Blind. Since 2005, she has also been the patron of ACHSE, the umbrella organization of self-help groups for people with rare diseases.
One might assume this is simply the standard occupation of a First Lady, but anyone who knows Eva Luise Köhler realizes: representation alone is not her way. She delves deeply into subjects, asks questions, and gives support. And when she is convinced by a cause, she makes sure it succeeds—no matter what other obligations she may have.
All of her commitments share a common thread: concern for children, especially those disadvantaged by illness or circumstance.
As a primary school teacher experienced with special educational needs, this is truly close to her heart. I vividly remember how Eva Luise Köhler, as the newly appointed patron of ACHSE, attended the annual conference of the German Society for Pediatrics and Adolescent Medicine. At that time, the Eva Luise and Horst Köhler Foundation for People with Rare Diseases had just been founded—from private means, with a clear goal: to strengthen research into rare diseases. Knowledge from her own family’s experience with an undiagnosed disease, her encounters as patron, and the often felt helplessness among families made something clear to her:
Without research, there can be no diagnosis.
And without a diagnosis, there can be no therapies.
But that is the greatest wish of people with rare diseases and their families.
The foundation has always focused on efficiency and impact. “To make a change”—that was the driving force for the Köhler family. Initially, the goal was to use a research award with a considerable sum of €50,000 to honor scientists working on key projects for rare diseases. From the very beginning—and not just due to her Swabian roots—it was clear the foundation would remain lean in structure and costs, to ensure every possible euro served its purpose. Thus, the ACHSE scientific advisory board was entrusted with selecting submitted applications. For 18 years now, we have been working together and have awarded research prizes totaling around one million euros.
This Eva Luise Köhler Research Award is now a highly prestigious honor and is recognized by academic panels—which is by no means a given.
We got to know each other better in 2007, when, as director of the Center for Women’s, Children’s, and Adolescent Medicine at Charité, I organized a charity gala. The proceeds were intended for ACHSE—to establish a case navigator, someone to support people with rare diseases on their challenging journey. Dr. Christine Mundlos took on this role—and still does to this day. This “navigator” concept was later adopted by many centers and care sectors and is now standard in areas such as stroke care and the management of neuromuscular diseases—a model that truly works.
The annual award ceremonies of the foundation quickly became a key event for the entire rare disease community—including scientists, clinicians, policymakers, supporters, and above all, patient families. To this day, all come eagerly and in greater numbers each year to Berlin for this occasion.
Patron, founder, award presenter, creator of the navigation model—for Eva Luise Köhler, this was clearly not enough.
In 2013, she surprised me by asking, when I was Dean of Charité, if I would succeed Dr. Berndt as chair of the foundation board. It was a great vote of confidence and a special honor—for anyone committed to rare diseases, it would have been impossible to refuse. Together, with the foundation council, we developed a new strategy. We quickly agreed: beyond the research award, the foundation must invest sustainably in young talent, network locations, and strengthen structures. We knew this would expand our scope, but it was also clear: we must prove that centers for rare diseases can more closely connect care, research, and innovation—and genuinely make improvements.
This thinking generated the Innovation Fund project “Translate NAMSE.”
The outcomes led to a decision by the Federal Joint Committee in April 2022: Centers for rare diseases are to be permanently integrated into standard healthcare. A real milestone. A health insurance representative aptly called Translate NAMSE a “blueprint for a connected healthcare system.” It was therefore only logical that the foundation subsequently became a member of the National Action Alliance NAMSE.
Other projects with a consistent focus on improving care followed, including many related to Hesse:
- founding of a Co-Creation Place, a think tank
- the initiative to establish a National Register for Rare Diseases (NARSE)
- online training for primary care providers in collaboration with STREAMEDUP in Wiesbaden
- joint projects with the Else Kröner-Fresenius Foundation—RISE, RECORD, the endowed professorship at UKE
and much more.
None of this would have been possible without Eva Luise Köhler. Her support creates trust and credibility. This is especially true for the founding of Alliance4Rare—an initiative of our foundation, which promotes young scientists in pediatric rare disease research and connects research centers. Our sincere thanks also go to Dr. Friede Springer, who is with us today, and whose generous support in 2022 made the founding of the Alliance possible at all. The Alliance continues to grow—bringing together supporters, research sites, and dedicated individuals—
and its mission is as simple as it is true: Only together can we make progress for those with rare diseases.
One of Eva Luise Köhler’s greatest strengths is her sensitive but determined involvement in policy. Her integrity, unassuming approach, and clarity open doors and garner attention for those affected. Countless people are deeply grateful to her for this.
Ladies and Gentlemen, let me conclude with a few personal words:
Dear Eva, I know how hard it is for you to hear all this about yourself.
To you, your commitment is a matter of course—an expression of your conviction.
But I have witnessed up close how, despite the demands of your husband’s office, despite some unfair criticism, and despite difficult times with illness in your loved ones, you never once set aside your efforts for those with rare diseases.
Without complaining, unwavering and warmhearted.
Your compassion and conviction make possible what seems impossible. Above all, you give people trust.
I myself have been fortunate to experience this trust over many years. It is the essential basis for the cooperation necessary to achieve real progress. A colleague once said: “Greatness and trust—moral stature and trust—are the most important prerequisites for success.”
Dear Eva,
it’s almost a year since we attended a BAP concert together. “Verdammt lang her”—such a long time ago, and yet so close. That shared experience, in a difficult period, was a sign of profound trust. We will never forget it.
On behalf of the foundation, on behalf of everyone present—and above all, on behalf of all people with rare diseases—
I thank you from the bottom of my heart.
Thank you for being a role model.
Thank you for your tireless commitment.
And thank you for being you.
If there were more people like you, our society would have far fewer worries.
Photos: Felix Zahn/photothek.de
