I don't have any expertise that can help here, but I want to chime in and say I feel you. My partner has a rare genetic disorder as well that has put them in the hospital many times in the past few years. We have been VERY lucky because a new drug that treats their condition fairly well was approved by the FDA just MONTHS before my partner started experiencing symptoms (https://en.wikipedia.org/wiki/Givosiran if you're interested). It's an extremely expensive medicine. Fortunately our insurance covers it! Best of luck to you and your family.

PS: I'm actually going to try apply to work for AllStripes soon.. Wish me luck!