Thank you.
Orphanet Canada is not resourced, per se, to help those families with the day-to-day activities. In that role, all Orphanet Canada can do is help direct them to the relevant organizations. But this is something I deal with in my practice.
Rett syndrome has been mentioned a few times. I heard the number of 17 young women in Saskatchewan. That's a rare disease, but that's still 17 people who can have a focus and a mission.
I see individuals with conditions where there might be 17 people in the world who have it or fewer, or their condition doesn't have a name so there is no group to coalesce around them, and you have to somehow still champion those people. That's really difficult, especially working in an overburdened health care system.
I don't have the final answer, but there are all these pockets of rare islands of people who do need help.