Finding the needle in a haystack
As a medical layperson, it is impossible and also somewhat presumptuous to classify the subject of research. Many outstanding works and initiatives stand in the face of the helplessness of a father who - quite naturally, I think - only sees the fate of his child.
RARE DISEASES
Approaches to Research
But what I see or experience is an infinite complexity, the lack of central contact persons, an illness that - even this is not unusual - receives little attention and a slowly but steadily deteriorating state of health of my child. To which I can not oppose. If you then read the few available studies, it is sentences like the following that show how important it is to take on the topic:
Every initiative needs an impulse, a trigger; someone to get things rolling. In this case the trigger was my son, the impulse comes from me.
But it should not be an initiative that depends on people - we are or were only those who hopefully get a few things rolling that ultimately motivate many to help many.
Therefore, the idea - the About - is a little different. Ben is introduced about one of his hobbies, me about my life, which has taken an exciting turn.
RARE DISEASES
Really rare and not relevant?
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For the upcoming "implementation phase" there are initial offers for voluntary internships and thus the chance to help shape it right from the start!
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Digitization, data, artificial intelligence - developments in the health sector can be observed at a fascinating pace. At this point will be Examples shown that are intended to be stimulating and encouraging.
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