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Our Stories
Gallery of Stars 4-2-08
Q & A What Families Think
Dr. Allanson Q & A
Order: Information about NS
Giving
Research
More Information (Links)
"No act of kindness,
no matter how small,
is ever wasted"
- AESOP
You can join
the TNSSG group or our cause on FACEBOOK
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Some of these links discuss features that are associated
with Noonan Syndrome. This does not mean that all features are seen in all persons with
the disorder. Some with Noonan Syndrome may have only a few of these features and some may
have many. There are also differences in terms of the severity of each of these features.
Some of the information herein may only be covering the "tip of the iceberg" -
those cases with features severe enough to require medical attention.
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Jody Williams, who started a company that sells clothes for babies
who need a G-tube. |
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Bundiebaby Medical
Support Apparel is now available to families with children who have
special needs so that you, too, can… Bundle your baby with ease.
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Links to the best articles on Tiny Titan and NS |
Adults and Noonan syndrome |
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Battling Back from poverty
Special
children's Tiny Titan book review
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List of places
with clinics for Adults with congenital heart disease
Congenital heart Groups for
Adults
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TNSSG |
Labs that can Test for the PTPN11 gene & KRAS
gene |
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NS/ACM (New 10-13-06)
Spanish article about Noonan syndrome SÍNDROME DE NOONAN
The
Noonan Syndrome Support Group, Inc. Home Page
Noonan Syndrome A Historical Perspective (New 4/21/05)
Founder
for TNSSG (Wanda's site)
Florida
State Representative (Pamela's site)
Rinke's
Page
Ermanno's
site
Virginia
StateRepresentative (Sue'e site)
Planet
Hope - Clickable map of TNSSG
TNSSG
Prayer List
Martha
Kate Downey site
Bienvenue
dans la communaut Noonan France! |
GeneTests Clinical Labs- lists all labs that test for the
PTPN11 gene
Correlagen Diagnostics, a
CLIA certified genetic-testing laboratory located in Cambridge,
Massachusetts
Noonan
Syndrome Testing at Harvard Medical School/Partners Genome Center
KRAS-Related Noonan Syndrome Labs
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Free tool provides you with
information on how
well the hospitals in your
area are doing |
Health Alerts |
Hospital Compare - A quality tool for adults,
including people with Medicare
This free tool provides you with information on how
well the hospitals in your area care for all their adult
patients with certain medical conditions.
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Johns
Hopkins Health Alerts Topic Page |
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Mechanism
to access healthcare reimbursement for those without private
coverage plus so much more |
The Family Village Library
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Adobe PFD
document: Access to Care for Children in MD with CKD & ESRD 1 16 04.pdf
These documents identify all the mechanism in
these states that provide healthcare reimbursement for those
without private coverage - it goes over how to access Medicaid,
Medicare, CHIPS, and whatever prescription drug programs,
Federally Qualified Health Centers, etc are available in that
state. While there are several areas specific to kidney disease
the information is otherwise generic. Links within the documents
connect you to that states programs. www.kidneyadvocacy.50megs.com |
Your source for information about disabilities.
Noonan Syndrome / Family Village Library
Learn More About It * Web Sites * Search Google for "Noonan Syndrome" ...
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Search useful internet resources for the general public. |
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Linketeria Website Directory -
Search useful internet resources for the general public. Websites
are listed by popularity and sites that exchange links are clearly
labeled. Webmasters submit your site and get free promotion
instantly! |
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Contact Us: Submissions for new links or documents are appreciated.
To contact us, click here.
This page and linked sites is to be used for informational
purposes only. Any of the information herein may not be complete or accurate and should
NOT be used as a substitute for seeking professional medical diagnosis, treatment and
care.
TALK TO PEOPLE WHO ARE MOST AFFECTED BY NOONAN
SYNDROME
We operate
a list service (discussion forum). If you would like to subscribe, and be
a part of our family, 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)
Wanda
Robinson,
The Noonan Syndrome Support Group, Inc.,
P.O. Box 145
Upperco, MD 21155, USA
1-888-686-2224 within the USA
or 410-374-5245
info@noonansyndrome.org
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