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Inclusion on the following lists does not necessarily imply endorsement, nor do we guarantee the accuracy of the information contained on these sites. Always consult your physician(s) with your questions and concerns.
Adults with CHD Informational Resources
Defect/syndrome Specific sites        Organizations
Early Intervention/Special Education  Summer Camps
Grief /Bereavement Transplant Resources            
Health Care/Insurance Web Guides
Humanitarian Organizations  

Return to the Internet links Home Page


Defect/Syndrome Specific Sites


The following is a collection of carefully selected links for many specific congenital heart defects and conditions. Before you begin your search for information, please understand that the resources you find may not accurately reflect your child's specific situation, especially when you or your child have more than one defect or condition. 

Many people find it helpful to have their physician give them a diagram of their (child's) heart. A detailed diagram, along with a good explanation by a member of your medical team, may be the best way for you to understand how your (child's) heart works, and what may need to be done to help the heart work better.


Arrhythmias
Information
     Indications for Anticoagulation in Atrial Fibrillation
       Atrial Fibrillation 
       Diagnosing Arrhythmia
       Explaining Arrhythmia
       Glossary of Terms
     Patient Education - NASPE (Information about specific types of arrhythmia)
       Directory of Pediatric Electrophysiologists
     Radio Frequency Ablation
  Organizations
     Cardiac Arrhythmias Research and Education Foundation, Inc.
     SADS Foundation
     Directory of Pediatric Electrophysiologists
Absent Pulmonary Valve
Information and Diagrams
 
Anomalous Origin of the Left Coronary Artery (ALCAPA)
Information
     Description
     Diagram and Information
Aortic Valve Stenosis 
Information
     Signs, Symptoms, Diagnosis, Treatments, Outcomes
Aortopulmonary Window
Information
     Diagram and brief description
Atrial Septal Defect (ASD)
Information
       Atrial Septal Defect: Surgical and Transcatheter Management
       Atrial Septal Defect (information, diagrams, treatment, flash movies) 
       Diagram: Atrial Septal Defect Primum
       Diagram: Atrial Septal Defect, Secundum
   
Atrioventricular Canal Defect (AVSD)
Information
       Diagram
       Diagram: Royal Children's Hospital
     Treatment: Heart Center Encyclopedia
Barth Syndrome
Information and Support
       Barth Syndrome Foundation
Bicuspid Aortic Valve
          Info/Diagrams 
 
Cardiomyopathy
  Information 
       Facts About Cardiomyopathy (NHLBI)
     Dilated Cardiomyopathy
     Hypertrophic Cardiomyopathy
     Idiopathic Cardiomyopathy
     Understanding Pediatric Cardiomyopathy
Organizations
     Hypertrophic Cardiomyopathy Association
       The Cardiomyopathy Association
 
Charge Syndrome
  Information and Support
       CHARGE Syndrome Foundation Inc.
Coarctation of the Aorta (COA)
  Information
       Diagrams, Diagnosis and Treatment: University of Michigan Congenital Heart Center
Congenitally Corrected Transposition of the Great Arteries (CCTGA/L-TGA)
  Information    
       Diagrams and Information: Mayo Clinic
Cor Triatrium
Medical Information
Cornelia de Lange Syndrome
      FAQ's 
Criss Cross Heart
      Diagram and Information
DiGeorge Syndrome
Information
     What is DiGeorge Syndrome?
Double Aortic Arch
  Information 
       Vanderbilt Pediatric Interactive Digital Library
Double Inlet Left Ventricle
      Diagram and Information
Down Syndrome
  Information 
     Down Syndrome: Health Issues
       Health Care Guidelines For Individuals With Down Syndrome
  Support
       Organizations Worldwide
     National Association for Down Syndrome (U.S.)
Ebstein's Anomaly
  Information
       Information and Treatment: MayoClinic
       Diagram and Information: Heart Center Encyclopedia
Eisenmenger's Syndrome
  Information 
       Information and Treatment: Mayo Clinic
   
Endocardial Fibroelastosis
Information
     What is EFE?
Heart Murmurs
  Information 
       Heart Murmurs and Your Child
     What is a Heart Murmur?
Hypertrophic Cardiomyopathy
  Information 
     Hypertrophic Cardiomyopathy
  Support
       Hypertrophic Cardiomyopathy Association
     The Cardiomyopathy Association
Hypoplastic Left Heart Syndrome (HLHS)
  Information
       Diagrams, Information and Treatment: University of Michigan Congenital Heart Center
     Fontan: University of Michigan Congenital Heart Center
  .....Animated Graphics of Surgical Procedures: Cincinnati Children's Hospital
     Fenestration closure: University of Michigan Congenital Heart Center

 

  Support 
       Online Support Group: C.H.I.N.
     Left Heart Matters
Hypoplastic Right Heart Syndrome
Information
      Diagram
      
Interrupted Aortic Arch
         Diagram and treatment
Kawasaki Disease
  Information
     Causes, symptoms, diagnosis and treatment: Lucille Packard Children's Hospital
       Kawasaki Disease: A Parent's Guide
Support
       Kawasaki Disease Foundation
Long QT Syndrome
  Information
     Brief overview: University of Chicago Children's Hospital
     Long QT Syndrome
  Support and Research
     Cardiac Arrhythmias Research and Education Foundation, Inc.
       SADS Foundation (U.S.)
       The Canadian SADS Foundation
Marfan Syndrome
  Information 
     Cardiac Concerns
     An Overview of Related Disorders
     What is the Marfan Syndrome? (AHA)
Organizations
       The Canadian Marfan Association
     Marfan Association U.K.
     National Marfan Foundation (U.S.)
Noonan Syndrome
  Information
     Fact Sheet
     Booklet (PDF File)
Support
       Noonan Syndrome Support Group
   
Patent Ductus Arteriosus (PDA)
       Patent Ductus Arteriosus: A Parent's Guide
       Diagram
 
Patent Foramen Ovale
      Information and Diagram
Pulmonary Atresia
     Diagrams and Treatment
Pulmonary Stenosis
         Diagnosis and Treatment
 
Pulmonary Hypertension 
  Information 
     Diagnosis and Treatment
       What Is Pulmonary Hypertension?
     Consensus statements: Pulmonary Hypertension Association
     Pulmonary Hypertension: Medline Plus
Organizations
     PHCentral 
       Pulmonary Hypertension Association (U.S.)
     Pulmonary Hypertension Association (U.K.)
       United Patients Association for Pulmonary Hypertension
Rubenstein-Taybi Syndrome
  Information 
       Book For Families
Support
     Rubenstein-Taybi
     RTS Canada
     RTS Support Group (U.K.)
Shone Syndrome
  Diagram
   
Stroke
  Organizations 
     Pediatric Stroke Network
       Children's Hemiplegia and Stroke Association
Tetralogy of Fallot (TOF)
  Information 
     Diagram, Diagnosis and Treatment 
       Diagram: TOF Repaired
 
Total Anomalous Pulmonary Venous Return (TAPVR)
  Information 
       Diagram
     Explanation, Diagnosis and Treatment
Transposition of the Great Arteries (TGA)
    Arterial Switch operation
Tricuspid Atresia
    Information, Diagrams and Treatment
Truncus Arteriosus (TA)
Information
     Diagrams, Diagnosis and Treatment
     Surgical Repair
Turner's Syndrome
Information
     Clinical Feature of TS
     Endocrinology and Turner's Syndrome
     FAQ
Support 
     The Turner's Syndrome Society of the United States
     Turner's Syndrome Society (Canada)
     The Magic Foundation
Transposition of the Great Arteries  (TGA, D-TGA)
  Information 
       Diagrams, Diagnosis and Treatment
Vascular Ring
        Diagram and treatment
Ventricular Septal Defect (VSD)
  Information
     Diagrams, Diagnosis and Treatment
       
VCFS
  Information
     Congenital Heart Information Network
     Frequently Asked Questions about VCFS
Support
       Velo-Cardio-Facial Syndrome Educational Foundation
   
Williams Syndrome
  Information
       Medical Guidelines
Support
     The Williams Syndrome Foundation Home Page
     Williams Syndrome Association


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