Unless you or a member of your family have a rare disease, I don't imagine you know what's it's like. I don't. Our kids have some conditions, none of them diseases, and none of them rare. Autism diagnoses are at an all time high and the waiting times for many are too long. We have support through various condition related groups and charities. I help at a local charity for disabled children and their families and we had a parent come in with a toddler who had a very rare condition.
