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General
Information
The Noonan Syndrome Support Group Website
TNSSG “is
intended for people whose lives are touched by Noonan Syndrome, and want to
exchange experiences and hopes regarding our children (or us). Associated
professionals are also welcome.” The site has information on Noonan Syndrome,
print resources for sale, and directions for joining the group’s ListServs.
"Noonan Syndrome: What Is It?"
This booklet (available online as a PDF) was published by the UK’s Birth Defects
Foundation in February 2006.
Noonan Sydrome Article at eMedicine
This was last updated on
12/12/07.
Noonan Syndrome Article at MedicineNet.com
This was last updated on 5/14/08.
Noonan Sydrome Article at MayoClinic.com
This was last updated 1/8/07.
Noonan Syndrome Article at MedlinePlus Medical Encyclopedia
This was last updated in 7/1/07 but does not include SOS1 or RAF1
mutations in its discussion of causes of NS.
Gene Reviews: Noonan Syndrome
This was written by Dr. Judith Allanson and last updated 9/6/07. The "Revision
History" at the bottom of the page is helpful in quickly checking out what is new.
Noonan
Syndrome at Genetics Home Reference, a service of the U.S. National Library of
Medicine
The last comprehensive
review of this page was in December 2007.
Click on its links to PTPN11, KRAS, SOS1, and RAF1 links for very clear
descriptions of these genes; mutations in them have
been identified in most of the people who have Noonan Syndrome.
Noonan
Syndrome: What Physicians Need to Know
You will need to register (it's free)
with Medscape to view this 9/27/07 article by Dr.
Jacqueline Noonan, Dr. Amy Roberts, and Dr. Jovanna Dahlgren.
Resources
PTPN11, KRAS, RAF1 and SOS1 Gene Tests for Noonan Syndrome
This is from The Harvard Medical School – Partners Healthcare Center for
Genetics and Genomics.
Growth Chart: Girls with Noonan Syndrome, 0 to 36 months
: from Novo Nordisk which sells growth hormone, "intended for use only by
healthcare professionals in the United States"
Growth Chart: Girls with Noonan Syndrome, 2 to 20:
from Novo Nordisk which sells growth hormone, "intended for use only by
healthcare professionals in the United States"
Growth Chart: Boys with Noonan Syndrome, 0 to 36 months
: from Novo Nordisk which sells growth hormone, "intended for use only by
healthcare professionals in the United States"
Growth Chart: Boys with Noonan Syndrome, 2 to 20;
from Novo Nordisk which sells growth hormone, "intended for use only by
healthcare professionals in the United States"
Online Groups
The Noonan Syndrome Support Group Discussion Forum
This is the largest
and most active of the online groups. To join this very supportive group, send
an e-mail to
listserv@home.ease.lsoft.com with only the following command in the message
body:
subscribe noonan-syndrome
(AOL subscribers also need
to type a period “.” in the subject line.)
In addition to
the ListServ described above, The Noonan Syndrome Support Group also sponsors
these more specialized lists at Yahoo! HEALTH Groups:
TNSSGInfo
"A place to collect and store information that would be of
interest to people affected by Noonan syndrome,” this is also the site for TNSSG
live
“Chats.”
TNSSGChit Chat
This is "intended
for people affected by Noonan syndrome who want a place to communicate or
chit/chat."
NSTeensOnly
This is "a place teens affected by NS can talk." It is
moderated by a young adult with Noonan Syndrome.
NS_Adults
This is "intended for adults (18+ years) with Noonan
Syndrome."
Noonan Young People Talking
This Google Group is The
Noonan Syndrome Support Group’s forum for people with NS who are under age 21.
And, this
is the new social networking place for TNSSG:
Visit Your Noonan Connection
These
Yahoo groups, associated with
www.careplace.com, are not very active at this time:
Noonan_Support (one of two Yahoo groups associated with www.careplace.com)
Noonans_Syndrome (one of two Yahoo groups associated with www.careplace.com)
Research
Research on
Language Development in Youth with Noonan Syndrome
Noonan
Syndrome/PTPN11 Gene Mutation Studies
Research Study Using Recombinant Human Insulin-Like Growth Factor-1/Recombinant
Human Insulin-Like Growth Factor Binding Protein-3 for Children With Noonan
Syndrome
NOTE: This study was terminated due to a patent legal settlement.
Effect of MAXOMAT ® on the Growth of Small Children to NOONAN's Syndrome
NOTE: This study is ongoing but not recruiting participants.
Misc.
Heather Nye's Website
Heather Nye’s daughter
Rebecca has Noonan Syndrome. This site includes very clear information about
the syndrome, as well as “Becky’s Story.”
Photos from TNSSG 2007 Conference
Photos
from TNSSG 2008 Conference
These are slide shows of photos taken by Rick Guidotti of Positive Exposure.
More of his photos from the conferences are available to view and buy at a
password-protected site.
TNSSG Conference 2007: Zero Gravity
TNSSG
Conference 2008: Style
These are thoughts by Kim Puchir about TNSSG Conferences and Positive
Exposure.
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If you have a child with Noonan Syndrome, you may also
want to check out the "Special Needs" category at
Links for Families with Young Children and
Links for Early Childhood Teachers
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