Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Merry Christmas! Sunday December...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday December 19,...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday November 21,...
Hi, I just joined today. When my youngest son Liam was born on Sept 8 this year, I was told he might have Beckwith-Weidemann Syndrome. I have found out today...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday October 17,...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday September 19,...
I am going through the process of trying to find a new health insurance for my family and it is really hard to get accepted when your child has a pre-existing...
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Hi there. I just joined the group and wanted to first say Thank You for all of you who have taken the time to post messages in this group! I have only read a...
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Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday August 15, 2005...
Any of you interested to get information on the latest therapeutic option in vascular malformations , specially of the KTS type please contact. This is...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday July 18, 2005 ...
My 5 year old son has been diagnosed with autism/asperger's recently, because of his behaviours and speech. He has fast mood changes, and lashing out snarling...
Hi! I just wanted to let other parents, whose babies have Sotos syndrome like symptoms but no diagnosis, know about this functional neurological syndrome: the...
Soto Syndrome Literature Review In the Nature Genetics article titled "Haploinsufficiency of NSD1 causes Sotos syndrome," that was published online 18 March...
Hi, Everyone, My first name is Jonathon. I'm currently an undergraduate student in Genetics and Molecular Biology. I'm joining this group because I want to...
Jonathon, We need more people who are enthusiastic about curing genetic disorders!!! This group is quite slow right now but I look forward to hearing more...
hi my name is liz tombs, and i have sotos syndrome, and ive had it for the past 27 yrs, and it can some times be a pain in the but, if there are any other...
Thank you all for your kind words and advice. I have taken it to heart and am acting on it. I started her on zithro again yesterday, and with the fever meds,...
Sher have just checked again - there is a support group based in the UK I think which has a contact email address that was updated only about two weeks ago. If...
Hi, I'm Sher, my 3 kids and myself all have Gorlin Syndrome, and would like to talk to others who have it..never have before..and would like to get some...
Hi everyone! My name is Laurie, my hubby Chris and I have 5 great kids - we are from NY. The kids: Andrew almost 16 has SGBS & Duanes syndrome (visually ...
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