Today through a newspaper supplement article I've learnt about Chloe, the 10 year old kid who has a rare disease that only suffer 12 people in the planet. There are millions of people suffering in the World, so why care, you may think. One of the reasons making this case worth our attention is that there's an investigation going on, they know what gene is causing the disease and they know they might be able to produce the missing substance causing the problem. They estimate that the whole process until a cure is produced would cost about 200,000€. The important part, as I see it, is that contributing to this investigation we're opening the door to finding cure to other diseases with similar etiologies. There are plenty of them.
This is the website they set up to explain the case, it's in Spanish but they have a translation link. This is the Gofundme site. All donations go to Dr Carles Mantilla of the GTIP institute in Barcelona which works in association with the Carlos III Institute in Madrid. That our government isn't funding this is beyond my understanding capabilities, fortunately scientific findings are global. It's sad that in three months they had only made under 4000€, but thanks to the public exposure the newspaper provided, things are improving pretty fast.