An organisation called Grobal is compiling growth charts for ten different syndromes, BWS being one of them. If you wold like to help please send an email to grobal@amc.nl and they will send you further information and a questionnaire. I would also be interested in any feedback about the process.
Bob Baker
BWS Support Group UK
Can anyone recommend a good geneticist? Who did u go to?
Help...I need advice. 
How long does genetic testing roughly take to come back?
Beckwith Wiedemann Syndrome
