Endo-ERN ePAG Bernd Rosenbichler shared a recent event organised by a local representative that featured his talented son Ben.

“Erich Irlstorfer, member of the German Bundestag, took up the topic of rare diseases almost 1.5 years ago – as a non-partisan initiative. He organized over 60 events with several thousand participants on the topic of Rare in Bavaria. He is in talks with European politicians to give the topic even more space. Other German states are following and also taking action. He brings his experiences and demands to the German Bundestag and to the political committees.

On July 13, he organized a farm festival in Gammelsdorf, in the district of Freising. Among others, Mrs. Eva Luise Köhler, from the foundation Eva Luise and Horst Köhler Foundation for Rare Diseases, which she and her husband founded, the Bavarian Minister of State Dr. Florian Herrmann and almost 200 other guests took part.

A special honor was bestowed on Ben Rosenbichler – a 12-year-old boy suffering from Alström syndrome. He was allowed to present 20 of his paintings as part of an exhibition. The fact that Ben, although almost blind, paints shows what we are capable of. That we must not be discouraged by restrictions – no matter what kind.

It was an all-round impressive but above all encouraging event: Erich Irlstorfer, who does not talk, but really acts, Mrs. Köhler, who underlined the importance of the topic with her impressive commitment to rare diseases and her participation in the farm festival. And Ben, who took us all into his impressive world with his pictures – and his words.”