June 22, 2024

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Science: More attention to rare diseases: applying the benefits

More attention to rare diseases: applying the benefits

In Germany, about four million children and adults live with one of about 8,000 rare diseases. The mother of an affected twin from Saxony wants more attention – and people moving.

With an app, people can be “rare disease activists” together and raise money for affected people and research projects through exercise. “More attention is needed,” initiative Katja Frank, whose eight-year-old daughter must be living with intractable neurofibromatosis type 1, told dpa in Dresden. The charity campaign began on Saturday. The goal of the campaign, scheduled until mid-October, is 5,000 hours of exercise in four weeks. “Anyone can participate, regardless of the method, in jogging, cycling or in a wheelchair.”

Saturday’s first charity race went from Lausche, the highest point in Upper Lusatia, to Dresden University Hospital. According to the information, a few runners and about 30 cyclists took part. Frank garnered notable support for her project with Eva Louise Koehler, wife of former Federal President Horst Koehler. She is the patron of the Chronic Rare Disease Alliance, which gives those affected a voice.

With the app, Franke, a mother of four from Hainewalde (Görlitz region), wants to give a face to people who don’t see rare diseases very often. This is also a problem in dealing with them, for example in the care classification. “The evaluation criteria are outdated,” she said, speaking of a “headwind” of diagnosis in 2018. Her girl implants malignant masses under the skin, on nerves. Since this is happening in the body, the eye cannot perceive it.

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“The issue of rare diseases has not yet reached our community.” And Frank wants to change that. So that research results can be converted into treatments more quickly, their charity campaign via the app should set a precedent – and eventually connect all 34 centers for rare diseases in Germany.

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