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
Behaviors/Emotional Needs with BWS
Three month old diagnosed with BWS
How reassured are you by UK doctors that frequent scans/bloods is not necessary for the 'low risk' hypomethylation at KvDMR genetic cause?