I have thought for a while now about the fact that the Treacher Collins Facebook groups and also the popular Yahoo group/email thing are mostly populated by parents of kids who have Treacher Collins Syndrome and whilst that's great for them to share advice and talk about medical issues it results in the majority of stuff being from parents and so ironically the people who actually have TCS don't feature as much. It was only when I was talking to another member of one of the TCS Facebook groups that I realised I wasn't the only one thinking this, so I decided to make my own group, obviously people can still be members of the main groups but this group is specifically for people who have Treacher Collins Syndrome to actually be able to talk and share pictures and advice or whatever without having to wade through all the posts from parents talking about their kids as they tend to do.
So here it is:
https://www.facebook.com/groups/168099453326386/
I've set it to closed privacy so I think I may have to choose whether to admit people or not but as long as you have Treacher Collins Syndrome you are more than welcome to join, hopefully we can get enough people to make it worthwhile.
