I also wonder about the snowball sampling approach to this. How do people with rare diseases get to know each other? I’d assume the major way is via forums for people trying to work out their rare diseases, which probably skews towards cases that haven’t been adequately handled by the doctors.
I also wonder about the snowball sampling approach to this. How do people with rare diseases get to know each other? I’d assume the major way is via forums for people trying to work out their rare diseases, which probably skews towards cases that haven’t been adequately handled by the doctors.