The mere fact that one of one's loved ones, family members, close relatives – in most cases children – is struggling with a so-called "rare disease" is both a huge task and a burden. It is a burden psychologically and a burden financially, since the treatment of any of the 6000 registered rare diseases, which affect around 5% of the population of the European Union, costs enormous sums of money, partly because of their rarity, but receives hardly any support. Due to medicines, care, special diets, creating suitable conditions for sick children, travel, therapies or possible interventions often only available abroad, their costs are extremely high. In most cases, financing them goes beyond the financial means of the family.

But there is someone to turn to!