I thought about this forum a few months back after meeting other parents all of us asking so many questions and realising so many where going without as there is no one telling them where to go for certain goverment benefits, mobility respite, carers and charities available to help. The feeling of isolation I had before I found DSUK I would not want anyone to go through, I think we all had so many questions at Center Parcs, I felt educated in many ways but also missing some info I'd not heard of. I am not wishing to take away anything from the facebook pages as they are great for support, they can not give a type of database and search facilties as this forum has to offer, I will continue to build this forum with the help of you all so we have a UK and Ireland based area for all the information we can accumulate which will benefit all of us and the newly diagnosed to come.
This is not my forum this is our Dravet community forum I have removed most all restrictions I can so you have an almost free rein across the board. we can only make this a great area if we all input into it.
I hope you will find this forum useful in the future as more is added by all of us, this is young at present
If you feel you have the time I would welcome anyone to Admin/Moderate this board.
I am also up for any criticism, opinion or ideas on developing this to be better.
over the next few days the homepage will be complete as this is purely a forum based website.
There are restrictions on the registrations so we can vet registrants and prevent spam.