Sturge Weber UK Website and Internet Forum
The website has recently been redesigned and updated. Although we have added more pages, we would welcome your ideas on any more you feel would be of interest. Perhaps you would like to write your story which we could also include in the newsletter.
The Internet Forum - see our Forum page - is now operational and we need you to join to make it work ( this is limited to members only, so please complete the online mebership form before applying to join) so that you can share experiences and help other families who face problems you may have already faced and solved. Whether this is about considering surgery, laser treatment, needing advice relating to educational statementing or the benefit system, whatever you know that knowledge could be invaluable to new families. We do try to keep you informed about changes that we are made aware of in the Newsletter but the forum could also be a good way of sharing this information. As Sturge Weber is a rare syndrome the forum is an excellent way to communicate with other families so as not to feel isolated. I never met or spoke to another family with a SW child until Liann was 22 years old. I know I am not alone as we have families with children even older than Liann who is now 42, as well as older members who suffer from SW.
The website has recently been redesigned and updated. Although we have added more pages, we would welcome your ideas on any more you feel would be of interest. Perhaps you would like to write your story which we could also include in the newsletter.
The Internet Forum - see our Forum page - is now operational and we need you to join to make it work ( this is limited to members only, so please complete the online mebership form before applying to join) so that you can share experiences and help other families who face problems you may have already faced and solved. Whether this is about considering surgery, laser treatment, needing advice relating to educational statementing or the benefit system, whatever you know that knowledge could be invaluable to new families. We do try to keep you informed about changes that we are made aware of in the Newsletter but the forum could also be a good way of sharing this information. As Sturge Weber is a rare syndrome the forum is an excellent way to communicate with other families so as not to feel isolated. I never met or spoke to another family with a SW child until Liann was 22 years old. I know I am not alone as we have families with children even older than Liann who is now 42, as well as older members who suffer from SW.
