Goldberg-Shprintzen megacolon syndrome is indeed a very rare genetic condition and has been described in about 10-15 individuals to date. Aside from this forum, you can also check out RareShare or organizations such as National Organization for Rare DIsease/NORD. Hope this helps. Take care and best regards.
Thank you for your reply. We have actually contacted NORD; however, this syndrome is not yet in their database!
there is 15 in the world and so many more undiagnosed...but I know your name and you have spoke to me in past posts so you should know that...do your homework santos