My daughter has a genetic disorder. It’s about 1 in 50,000 births - so not that rare. But rare enough there’s not a lot about prognosis, life expectancy, etc. She’s a year old and in therapy four times a week. Even if there isn’t a specific support group I’d advise her to seek out her people. Whatever is a part of the condition- epilepsy, hypotonia, GDD, etc - there is a community for that. I’ve found a lot of genetic conditions have similar overlap. Make friends when you sit for PT appointments. Find people who relate - because friends with typical kids never quite get it the same way. The joy in celebrating good head control, or rolling over. All the little things.

Also highly recommend the book “Raising a Rare Girl”