PARENTS EXCHANGE Congenital Diseases/Disorders

 

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NORD:National Organization for Rare Diseases Large Database of Diseases, Index of Organizations, more.

Ataxia-Telangiectasia A-T Children's Project, How is A-T Inherited, More.

Pediatric Database:Aarskog Syndrome  Fact Sheet about Aarskog Syndrome and the Epidemiology, Pathogenesis, Clinical Features, and Management.

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.

Superkids Once an active newsletter for families and friends of children with limb differences, this archive only site still offers ample information.

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.

Pediatric Oncall Information about undescended testis in children and its treatment.

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

Feeding Your Infant With Congenital Heart Disease American Heart Association : information on baby's growth, how to feed your baby, tips, breastfeeding, formula feeding, tube feeding, when to begin solid foods, heart medication and feeding and more.

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.

Coping with Congenital Heart Disease in Your Baby Article published by The American Academy of Family Physicians. 

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. 

Klippel-Feil Syndrome Circle of Friends A Support Group. Information and Links. 

Ehlers-Danlos National Foundation Support and information to those affected by Ehlers-Danlos syndrome and their families.

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.

Questions and Answers  FAQs about Craniosyntosis, News, and Patient and Physician Resources.

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

Avenues Support group for individuals, families, and medical professionals interested in Arthrogryposis Multiplex Congenita (AMC). Includes Resources and Links.

Mayo Clinic Treatment of Congenital Urologic and Nephrologic Disorders in Children.

Health Library of Children's Hospital of Pittsburgh Congenital and Hereditary Disorders.

Congenital Heart Defects "1 in 100 - The number of children born with a Congenital Heart Defect"...Facts and Links.

Websites with Congenital Heart Information Links

 

 

 

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