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HOSPITAL WEBSITES
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Official website for Cardinal Glennon Children's Hospital.
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Official website for St. Louis Children's Hospital. Learn
more about your child's treatment and care at St. Louis
Children's Hospital through the Cardiology link.
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GENERAL HEART DISEASE WEBSITES
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In addition to adult onset heart disease, this site has
some useful information about congenital heart defects,
including a description of various heart defects and pictures.
"My HeartMail" is a service provided by the American
Heart Association that allows individuals to receive emails
personalized to their specific needs and interests.
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The Congenital Heart Information Network's goal is to
provide information and resources to families of children
with congenital and acquired heart disease as well as
adults with congenital heart defects.
For information on funding resources, check their website
at http://www.tchin.org/donate/
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Children's Heart is a Canadian non-profit, non-government
funded charitable organization that is totally operated
by volunteers and support families of children with heart
disease.
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CHASER is a family based organization that specializes
in children who have congenital heart defects. The primary
purpose of the organization is to offer parents, professionals
and affected individuals resources that may be helpful.
The organization understands the financial, educational,
medical, emotional and other issues that concern families
who have children with congenital heart defects.
CHASER maintains a national database of families with
congenital heart disease and offers a Parent-to-Parent
Networking service.
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The Congenital Heart Disease Webring is a collection
of websites that are linked together. The goal of this
webring is to link together as many congenital heart defects
related web pages as possible. By linking all of the sites
together, it will be easier for people to find the information
they need.
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Kids with Heart is a non-profit family based support
group. The mission is to provide support, information,
and education for families of children with congenital
heart defects and to promote public awareness of the issues
families live with on a day to day basis.
Kids with Heart is independent from all hospital affiliations
and is not affiliated with any other national organization.
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ADULT CONGENITAL HEART DISEASE WEBSITES
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More helpful information about CHD from Barnes-Jewish
Hospital in St. Louis, MO. Also read more information
about the CHD
Center in the September 2001 notes.
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The Mayo Clinic has a special clinic for adults with
congenital heart disease. Information about adults with
congenital heart disease is available on this site.
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TEENS CONGENITAL HEART DISEASE WEBSITES
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Camp for children and teenagers who have congenital heart
problems or have had heart transplants.
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Topics of interest, including "What makes you angry and/or
happy about growing up with a heart condition?"
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HEART DEFECTS ASSOCIATED WITH SPECIFIC
GENETIC SYNDROMES
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The Genetic Alliance is an international coalition of
individuals, professionals and genetic support organizations
that are working together to enhance the lives of people
who are impacted by genetic conditions.
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Approximately 40 percent of children with Down syndrome
have a heart defect. The National Down Syndrome Congress'
mission is to be the national advocacy organization for
individuals with Down syndrome and to support and empower
people with Down syndrome.
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The Turner Syndrome Society is a non-profit organization
whose mission is to increase public awareness and understanding
of Turner syndrome and to provide a forum where individuals
with Turner syndrome can become acquainted with others
in similar situations.
Individuals with Turner syndrome often have coarctation
of the aorta.
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The Williams syndrome association is comprised of families
who have children with Williams syndrome and whose goal
is to provide education and support. Children with Williams
syndrome often have pulmonic stenosis.
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WEBSITES FOR SIBLINGS
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Sibling Information Network
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The Sibling Information Network was founded to bring
families with children who have health concerns together
for support. Children with health concerns have unique
needs, as do their family members. Network members include
parents, educators, physicians, nurses and counselors.
Sibling Information Network
249 Glenbrook Road
PO Box U64
Storrs, Connecticut 06269-2064
voice: (860) 486-4985
fax: (860) 486-5037
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BEREAVEMENT GROUP
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The Compassionate Friends is a national organization
comprised of families who have lost a child due to a variety
of reasons. The group provides support and care to families
around the country.
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GriefNet is an Internet community of persons dealing
with grief, death, and major loss. We have 47 email support
groups and two web sites.
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OTHER HELPFUL SITES
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The American Pediatric Heart Fund.
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A site designed by parents of a child with HLHS to help
other parents receiving the prenatal diagnosis of Hypoplastic
Left Heart Syndrome (HLHS).
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First Steps is designed for children, birth to age 3,
who have delayed development or diagnosed conditions that
are associated with developmental disabilities.
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