[dsfyu404ed]

There's 21 people known to have or have had (I assume not all are living) disease. 21, ever, in the whole world.

You're going to have a hell of a time getting anyone to dedicate resources to this anywhere but likely a harder time a harder time getting resources dedicated to this in a market where treating a rare disease is not as lucrative. Whether it should be as lucrative as it is in the US is a different discussion. Of course she made a public appeal. It opens up the possibility of raising that number to more than 21 and if some pharma company has a stack of cash they want to burn on PR they can use that stack of cash to try and help make progress toward understanding this disease in a suitably visible way.