Many thanks. Yes, I've gotten in touch with them and they do seem helpful (and have a really good website). I'm still keen to hear from anyone who has experience with the syndrome. Thanks so much.

If you don't hear from anyone local, the Prader Willi Syndrome Association, may be help to be able to put in contact with other families. The also hold an annual conference and i know many families attend.
http://www.pwsa.co.uk

Hi. I'd be interested in talking with anyone who is willing and has had experience with PWS. My niece was just diagnosed with this, at 3 weeks old. On the medical side, they have some very good people to talk with but I am also interested in how families have dealt with it and what we might expect.Thanks so much in advance.