The Federal President’s Citizens’ Festival recognizes all those who are especially committed to society – whether on a large or small scale, in voluntary work, research or social fields. This year, several thousand guests from all over Germany were in the spotlight, dedicating themselves daily to helping others. It was a special honor for us to be present as a partner organization and to share information about the lives of people with rare diseases and the importance of rare disease research during the event.
There was great interest at our stand in the park of Schloss Bellevue: numerous visitors took the opportunity to learn about our projects and objectives, ask questions, and talk with us about the challenges in the field of rare diseases – and specifically about childhood dementia. Our topics became tangible thanks to a varied interactive program: from a chromosome quiz, simulation glasses that offered insights into the world of those affected, to a model brain to explore and a memory wall for visitors to contribute to. Many personal conversations once again showed just how important it is to share knowledge, raise awareness, and give a voice to those affected by rare diseases.
A particularly special highlight was the visit of Elke Büdenbender, wife of Federal President Frank-Walter Steinmeier, and Dr. Dörte Dinger, State Secretary and Head of the Office of the Federal President. During the personal exchange, we had an intensive conversation about our work, current developments in healthcare, and the specific needs of people living with rare diseases. Such meetings are not only a form of recognition, but also deliver valuable inspiration for our ongoing work.
These two days at the Citizens’ Festival impressively showed us: dialogue creates awareness – and can truly make a difference. We are grateful for the great interest, open conversations, and the many positive responses. A heartfelt thank you to the Federal President’s Office for the invitation and to our wonderful colleagues at the NCL Foundation: Together we were able to reach many people and make a real impact.
Our goal remains clear: make rare diseases visible, empower those affected, and inspire change. We continue to work towards this with all our energy and take plenty of motivation, valuable encounters, and diverse ideas with us from the Schloss Bellevue park.
