Rare diseases are generally not huge money makers for big pharma. That is why there isn't as much money being devoted to them to find a cure. The fact that Larry Page is donating is a great reason to capture some of that long tail for whatever reason.
While perhaps not blockbuster, orphan drugs for rare diseases can turn quite a profit for pharmaceuticals.
http://www.forbes.com/sites/johnlamattina/2012/05/02/how-com...
http://online.wsj.com/article/SB1000142412788732392610457827...
Genzyme was built on rare disease drugs.
Why is his financial allocation a problem? Nobody was complaining when he wasn't donating to VHI at all. I'm sure it pales in comparison to what the public donates to sports teams and the movie industry.
Of course it's his money and his choice, and there's nothing bad or wrong about funding something that's important to him, but it does seem a little... shallow, I suppose.
I can be selfish too.
I think it's selfish/egotistical for someone who wants to donate a TON of money to medical research to choose a disease that he/she happens to have instead of sitting back, doing some research, and supporting research that will help the most people. That's just my opinion. I can see the other side of the coin too. Hell, maybe the amount of money we're talking about here is peanuts compared to the amount of money Larry already donates to other more widespread medical causes, maybe Larry just failed to mention that in his writeup. I suppose one shouldn't jump to conclusions.
Bottom line is that it's none of your business.
Just getting a rich guys attention and having him throw some money research's way is a crap-ton better than another jet-helicopter or mega-yacht.
Behind many non-profits and causes there was a similar personal catalyst. People trying to get rid of the three strikes law or drunk driving were many times similarly motivated into action by a personal tragedy.
Maybe he just had the chance to learn a lot more about this particular disease and so it's more natural for him to invest there. It sure would feel more natural to me to contribute to research on a disease that I have experienced first-hand than to some other random one, even if the random one is more "important." No selfishness there. I would just identify better with the victims and have a more real urge to help them.
Give the man a break. It's good that it's not life threatening at this point as there are certainly much worse CEOs in the world.