PARENTS EXCHANGE Congenital Diseases/Disorders

 

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Adam.com: An Overview  Definition of Aase Syndrome and a short discussion on the causes, incidence and risk factors.

Amniotic Band Syndrome  Information about congenital birth defects (including clubfoot) caused by entrapment of fetal parts.

NINDS: Holoprosencephaly Information sheet from the National Institute of Neurological Disorders and Stroke.

NINDS: Encephaloceles Information sheet from the National Institute of Neurological Disorders and Stroke.

The Children's Heart Society  Support group, dedicated to helping families affected by Congenital Heart Disease/Defects. Links and Information.

Hearts Of Hope  Stories of children born with Hypoplastic Left heart Syndrome (HLHS). Information and Links.

Will's Heart Page The Personal Home Page of a little boy who was born with Congenital Heart Disease. Links and information for families of children with heart defects.

Fontan Operation Page Information on Fontan Surgery, used to treat complex birth defects of the heart like Hypoplastic Right and Left Heart Syndrome and Single Ventricle.

Mamas Health Information about Acyanotic Congenital Defects.

Victorias Heart A personal Home Page of a young woman born in 1983 with complex heart defects (Tricuspid Atresia, ASD, VSD, and Coarctation of the Aorta).

Pediatric Cardiac Surgery A Parent's Guide on how the heart works, congenital heart defects, preparing for surgery, recovery, and parent support group. 

The Clubfoot Club Information, and a "Kids Club".

The Bumpy Bone Club A support group for kids with Multiple Hereditary Exostoses and their families. Includes personal stories by  children.

Children With Clubfoot Advice, Information, Personal Story, and Support.

Marfan Syndrome Facts about Marfan Syndromeuide (a connective tissue disease).

Children's Heart Institute: What is Marfan Syndrome? Information and graphics.

Pierre Robin Network Information about the condition, including genetics, issues and a glossary. Includes an email group, message board, and personal accounts.

Osteogenesis Imperfecta Foundation  Support and information to patients, their families, and medical professionals

Websites with Congenital Heart Information Links

Congenital Adrenal Hyperplasia The Magic Foundation

Adrenal Diseases - Congenital Adrenal Hyperplasia ( CAH ) The Facts You Need To Know

Child's Struggle With Heart Congenital Heart Disease Mathew's fight with heart disease as told by his mother.

Megan's Heart Page Story of a daughter and her struggle with several heart birth defects.

 

 

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