Author name: daniel.kraus

Hello, my name is Daniel, I live with the rare disease Fabry disease. It is a genetic metabolic disorder that belongs to the group of lysosomal storage diseases and can affect many parts of the body, often in ways that are not visible to others. For many people living with rare diseases, it can feel lonely or difficult to find understanding. That is one of the reasons why it is important to me to speak openly about Fabry disease and share my experiences. I created a website dedicated to rare diseases where I share information, document my personal journey, and give a voice to others who are affected. My goal is to raise awareness, make knowledge more accessible, and show people that they are not alone with their diagnosis. In addition, I am also a YouTuber and blogger. Through these platforms, I try to educate people about rare diseases, provide insight into daily life with Fabry disease, and encourage exchange within the community. One thing that is especially important to me is to show that even with a rare disease, it is still possible to stay active, create meaningful projects, and inspire others.  

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Welche olympischen Sportarten siehst du dir am liebsten an? For me, it’s definitely cycling races. I love road cycling, and

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LHON (Leber Hereditary Optic Neuropathy) is a rare, inherited mitochondrial disorder that primarily affects the optic nerve, leading to sudden,

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Nenne etwas, was die meisten Leute nicht verstehen. Something many people don’t understand: Rare diseases. For most people, illness is

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