This organisation was very helpful when my son was diagnosed with WAGR last year. The people that run the association are very friendly and approachable and very willing to answer the questions we had, even the silly ones. It is great to know that this sort of support is here. Their website was very valuable in relation to knowing what having this syndrome meant as it is so rare.
The only constructive feedback I would have is it does say International but their fundraising campaigns etc are very much bases in the USA. I have found that there seems to be quite a few people with WAGR in Europe and further afield. Also it would be great if the website could be updated more or if more people could become involved in discussion threads etc on it as its always good to have people to talk to with the same experiences