“Art makes visible” – this was the motto of a celebration in support of people with rare diseases that took place on July 15 in Gammelsdorf, Bavaria, at the invitation of Erich Irlstorfer, Member of the German Parliament. Eva Luise Köhler, patron of the “Rare Diseases Bavaria” campaign, was among the 200 guests. The comprehensive awareness campaign gave a voice to people with rare diseases and their families through more than 60 events in 2023, thus raising public awareness of rare diseases.
In her welcoming speech, Eva Luise Köhler emphasized the importance of a common commitment to people with rare diseases and thanked Erich Irlstorfer and his team for their constant efforts and for organizing the summer event: “Let us take the opportunity today to look back together on what we have achieved. And let’s also use it to look ahead and develop new ideas,” she appealed to the audience.
A special highlight of the festival was the exhibition of eleven-year-old Ben Rosenbichler, who creates impressive works of art despite his severe multisystemic disorder, Alström Syndrome. His colorful paintings (Ben’s Art) touched the visitors deeply. They encourage the viewer to rethink perceived certainties and open up new perspectives. Another highlight of the program was the presentation of the White Paper of the “Rare Diseases Bavaria” campaign to Eva Luise Köhler and Minister of State Dr. Florian Herrmann MdL. The comprehensive document contains detailed proposals to improve the care situation for people with rare diseases. It will be published shortly and is intended to serve as a basis for discussion in order to raise the profile of rare diseases in the political and public arena.
The event came to an atmospheric close with musical accompaniment. Eva Luise Köhler finished with an urgent appeal: “Let us give people with rare diseases the attention they need and deserve today and every day of the year.
Photos: Office Irlstorfer, Bernd Rosenbichler
