In countries with single-payer health care, it seems reasonable to use some funding from taxpayers on diseases that aren't considered to be profitable by the existing for-profit medical research companies. i.e. the medical research market is not providing what is needed by the population, so supplement that market using taxpayer funding. In the USA though, that doesn't seem feasible, but perhaps you could reach out to patients in Canada, the UK, Europe etc and through them get taxpayer funding from outside the USA.