Application Science Award 2018
From San Francisco to New York City: Awareness Cycle Tour for Children with Rare Diseases
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Explaining rare diseases

For the first two years of his life Jonas was a healthy and happy child. He was never really ill in these two years. But three weeks after his second birthday, in a twist of fate, Jonas developed a cough and a high temperature. His paediatrician diagnosed him with bronchitis and prescribed antibiotics. He seemed to have recovered from his illness, but two months later he became ill again. A small wound on his arm developed a patch of redness around it, which soon went on to cover his whole arm. Jonas was admitted to hospital where he was again given antibiotics, albeit this time intravenously. He was allowed to go home again a few days later.

No-one thought that Jonas’s different bouts of illness could have a serious underlying cause. But Jonas kept becoming ill, and as well as having a cough and a high fever, he then suffered from ear infections and long bouts of diarrhoea. His mother Eva was very worried and visited one doctor after another with Jonas, but none had any answers and her concerns for Jonas’s health became ever more pressing. Experts at two university hospitals submitted Jonas to a number of elaborate specialised tests, but they all failed to deliver results. Jonas’s illness remained a mystery

Jonas’s story is not a unique one. Every year in Germany alone several thousand children die of a rare disease.  Their families are often left alone to come to terms with their suffering.

It is for this reason, that the Care-for-Rare Foundation would like to inform, be it at schools, universities, within families, or in doctors surgeries, about these rare diseases. We would like to initiate a child-friendly programme informing the public about rare diseases and making them aware of the fate of the many children still suffering from incurable diseases. We want to make sure that the children suffering from rare diseases and their families do not get pushed to the edge of society and forgotten, but that they remain the focus of our sympathies, and that we continue to be aware of them and care about them. Above all there can only be hope for cures if the research into rare diseases is broadly supported and its importance recognised.

Your contact:

Anne-Marie Flad

Tel: + 49 89 4400-57947
Fax: +49 89 4400-57702