This is a Rare Disease Support eGroup for persons affected by "Noonan's Syndrome," family, medical professionals and anyone else interested in sharing...
David Hughes
egroups_moderator@...
Jun 9, 1999 8:36 am
2
Lucy, I recently received an email asking about our eGroup. This is a new site that I am just starting. I personally have no experience with Noonan's Syndrome....
egroups_moderator@...
Jun 9, 1999 8:50 am
3
Check out this site: The Complete Community Directory to Rare "Orphan" Disease Support eGroups. eGroups.com home: http://www.egroups.com/group/noonan_support ...
egroups_moderator@...
Jun 9, 1999 9:25 am
4
Lucy, I recently received an email asking about our eGroup. This is a new site that I am just starting. I personally have no experience with Noonan's Syndrome....
egroups_moderator@...
Jun 14, 1999 6:21 am
5
I am a new member to this group that until last night did not know that much about Noonan Syndrome. I have two brothers that have one healthy child each. Each...
billycpa@...
Nov 13, 1999 12:44 am
6
Hi, my name is Louisa and my 4 year old son has just been diagnosed with Noonan's Syndrome (in november) and I found this list while browsing. My son is...
Loobielou
loobielou@...
Jan 4, 2000 3:20 pm
7
Louisa, Hello and welcome to the noonan_support eGroup. This eGroup is relative new and there are only about 5 members so far. I am working on promoting this...
David Hughes
davidhu@...
Jan 7, 2000 5:33 pm
8
Hi I just found this egroup tonight. Thought I would let you know that there is a Noonan Snydrome support group email and snail mail that is already active...
Shirley Wilbers
eearl2@...
Jan 8, 2000 12:27 am
9
Bonjour, 1er contact avec votre association. Ayant de la famille avec un petit garçon de 6 ans atteint du syndrome de Noonan, je voudrais contacter des...
jean-claudechabot@...
Mar 10, 2000 9:57 pm
10
Hello, This is my 1st contact with this group. I have a 6 year old little boy with NOONAN'S SYNDROME. I would like to contact people likely to bring...
Rarediseases@...
Mar 10, 2000 10:11 pm
11
There is an excellent support group for those affected by NS. www.noonansyndrome.org The Noonan Syndrome Support Group PO Boxd 145 Upperco 21155 MD USA...
michellis@...
Jan 29, 2001 1:28 pm
12
I am a 30 year old male who has delt with NS firsthand. I have some of the symptoms of NS such as webbed-neck(corrected with plastic surgery at 13), heart...
Hello everyone, My name is Kathy and I have a 3 year old daughter with Noonan's. I am anxious to talk to others that are affected by this genetic disorder....
... some ... loss. ... bad ... Hi my name is Alyson and I'm 41 years old.I was born with congenital heart disease.I had pulmonary stenosis and atrial septal...
HELLO, MY NAME IS DEBRA, I HAVE A SON WITH NOONAN SYNDROME. HE WAS DIAGNOSED AT BIRTH. IF THERE ARE ANY QUESTIONS THAT YOU MIGHT HAVE. I WOULD BE HAPPY TO HELP...
Oh my gosh I have a million and one ? to ask you. How did he get diagnosed at birth? It took me a year and 3 major hospitols.Peyton was just labled delayed and...
hello I am new here an really need help in understanding this for I have an 8 year old who has been diagnoised with noonan syndrome.,she has got the features...
Hello, I see this is a very slow group, but I figured I'd check it out :) My name is Shannon, I have 3 kids, soon to be 4. We are adopting a little boy who...
Hello, My name is Jacqui and I am a mom of a 10 year old boy who has experienced many of the same difficulties (physical, emotional, and educational) as many...
Hi, My name is Beth and my son Zachary was just diagnosed with Noonan Syndrome this past week. He is almost 14 months old. He tested positive for JMML at 2...
Hello, all! I am a special ed teacher and have been researching Noonan's syndrome lately. Didn't realize how rare it was and how little info is out there....
hiya my name is jane, my son jonathan has noonans .. i wouldnt change him for the world he has his own little personallity ..we do have our moment with him tho...
Hi - my name is Heather and I have a daughter Becky (9) with Noonan Syndrome. (There is some information about her at www.hnye.com) Looking forward to...
My Name is Kim and my Son Kyle(16) was born with Noonans. Well that was a dumb statement, of course he was born wit it, you don't catch it. Kyle is pretty...
... heart ... the ... this ... Hi Beth Nice to meet you. I am glad Zach does not have any heart problems. Kyle also had feeding problems. he failed to thrive...
Hi, My 7mth old son Bailey was diagnosed with noonans last week. It's a 2nd shock for us because he was also diagnosed with jmml (juvenile myelomonocytic...
Hi Lorraine, My 14 month old Zachary was diagnosed with noonans in mid-October. He also was diagnosed with JMML in October 2003. The doctors didn't think that...
Hi, My son Ryan 6 years old has Noonan Syndrome. We are going to have our first heart surgery on December 6th. He has Pulmonary Valve Stenosis as well as...
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