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Our son (3 years old) has just been diagnosed with Coats disease (Sep 2008), after a year and half of pestering the medical profession. Thank goodness he does not have Rb, and we can not possibly imagine how families given this news can feel. We sympathise with anyone who is going through the same rollercoaster ride we did, and the lack of information is excruciating. We are still finding things out now, so we are interested in making contact with other families dealing with Coats. We're in Eton, UK. Our consultant is Mr John Hungerford. If you'd like to make contact, please do! Search for my username on google, and you'll find our home web site.
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