I hate to sound like an ungrateful pessimist but how are we supposed to gather significantly more people to take the survey if the number of people affected - at least visibly in the internet - isn’t that large? How many people would we need to get to gain further attention by scientists? Would 1000 be enough? Are there even so many people affected in other places of the internet to reach out to? Wouldn’t getting 1000 people to take the survey take another 2-3 years? Is 1000 even enough or still a negligible number for science?
Again please don’t misunderstand: I totally and wholeheartedly support the survey and the impressive efforts for this patient community. Just feeling pretty uneasy right now.