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Matthew D.

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1 reviews

Review for International Wagr Syndrome Association, Hanover , PA, USA

Rating: 5 stars  

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

I've personally experienced the results of this organization in...

Our knowledge around the syndrome and the associates I have built up as a direct result of this organisation.

If I had to make changes to this organization, I would...

As above, I would Widen the basis of their fundraising etc and try to use the website more as I am very far away from the base and this is the best way of communication for me

Role:  Client Served & I received help and support and information from them.