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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 Pulse Oximetry Screening
Grief /Bereavement Summer Camps
Health Care/Insurance Transplant Resources            
Humanitarian Organizations Web Guides

Return to the Internet links Home Page


Adults with CHD

Information
    ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease
    ACHA Vision 2020
  A Guide for Adults with Congenital Heart Disease
    Adult Congenital Heart Clinics
Adult Congenital Heart Disease Passport (ACC)
    Adult Congenital Heart Disease: A Patient and Family Guide
    Care of the Adult With Congenital Heart Disease - 32nd Bethesda Conference
    ACHD CHAT with Richard Donner, M.D.
   

Topics: Ablation; Atrial Arrhythmias; Coarctation Repair; Eisenmenger's Syndrome; Hemoptysis; Nose Bleeds; Pulmonary hypertension in TOF; Scoliosis; Valve Replacement

Especially for Patients - ISACCD
    Living with Heart Failure
    Parents and ACHD'ers Speak Out!
    Questions and Answers with Mary Cannobio, RN, MN, FAAN
   
Gynecologic/Reproductive Issues in Congenital Heart Disease
  Insurance and Legal Issues
    Americans with Disabilities Act (U.S.)
   
A comprehensive resource published by the U.S. Department of Justice
    Consumer Guides for Getting and Keeping Health Insurance (U.S.)
   
Information about insurance law and assistance programs listed by state
  Support
    ACHD Online Support Group
    Adult Congenital Heart Association (U.S.)
    Canadian Adult Congenital Heart Network
Canadian Congenital Heart Alliance
    Grown Up Congenital Heart Patients Association (UK)


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Early Intervention/Special Education

Early Intervention
 

Eight Tips for Surviving Your Child's Developmental Assessment

    Programs for Infants and Toddlers (U.S.)
    Zero to Three: National Center for Infants, Toddlers and families
   
  Special Education (School Age - U.S.)
    A Parent's Guide to Section 504
FAQ about Section 504 and the Education of Children with Disabilities
   

Learning Disabilities:A Guide to the Individualized Education Program (IEP)

    National Information Center for Children and Youth with Disabilities
   

Your Child's Evaluation

The Differences Between IDEA and Section 504
    The Center for Health and Health Care in Schools
    The Emerging Recognition of School and Behavior Problems in Children with Congenital Heart Defects
     
 

Speech/Language

   

Auditory Processing Disorder

   

Normal Speech/Language Milestones

   

Speech and Language Disorders: General information about specific speech and language disorders



Grief/Bereavement

  Books about the Death of a SIbling
  Experiencing the Death of a Sibling as a Child
GriefNet
  Memorial Garden
  Pregnancy and Infant Loss Center
  SHARE: Pregnancy and Infant Loss Support
  The Compassionate Friends, Inc.
  The MISS Foundation


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Health Care/Insurance

5 Steps to Understanding How HIPAA May Affect You
A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan
Benefits For Children With Disabilities
  Centers for Medicare and Medicaid Services (Including info on CHIP)
Child Health Law and Policy Project
  Consumer Guides for Getting and Keeping Health Insurance (U.S.)
  Directory of State Title V Children with Special Health Care Needs Programs
  Disability Evaluation Under Social Security (SSI)
Emergency Information Form for Children with Special Health Care Needs
  Evaluating Managed Care Plans for Children with Special Health Care Needs
  Foundation for Health Coverage Education
Healthcare Coverage Options Database
  Health Insurance Consumer Guides
HIPAA - National Standards to Protect the Privacy of Health Information
HIPAA: Your rights to health insurance portability
  How to Use Your Managed Care Effectively (American Academy of Pediatrics)
  Institute for Child Health Policy
  Insure Kids Now

 

Medicaid: State & Territorial Government Information
  National Coalition on Health Care
 

Pre-Existing Condition Insurance Plan (PCIP)

  The Health Insurance Portability and Accountability Act (HIPAA)
RxAssist:Patient Assistance Program Center
  Social Security: Compassionate Allowances
SSI: Your Right to Appeal

Prescription Assistance Programs
    
Prograf : Value Card Program
        Cellcept: Coupon Card
        Valcyte Co-pay Card Program


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Humanitarian Organizations

  Aldo Casteneda Foundation
  Big Love Little Hearts
Children's Heart Link
  Healing The Children
Heart Gift
  Heart to Heart International
  International Children's Heart Foundation
International Hospital for Children
  PatientTravel.org - National Patient Air Transport HELPLINE
Project Open Hearts
  Save A Child's Heart
Shevet Achim
  Samaritans Offering Support: SOS  (Financial assistance with medical expenses)
Spencer's Fund (Financial assistance for families/achd'ers in the U.S.)
  The UnitedHealthcare Children's Foundation


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Informational Resources

Glossaries / Dictionaries
  Glossary of CHD
  Glossary - NASPE
    Library of Heart Diagrams: Royal Children's Hospital
    The Heart Center Encyclopedia
   
  Medical Information
Cardiopulmonary Bypass
  Center Watch: Clinical Trials Listing service
    CHD Fact Sheet
Child Physiology
    Children and Clinical Studies
Genetic Counseling
Genetics Home Reference
    Heart Conditions Home: Aboutkidshealth.ca 
    Medline Plus: Drug Information
    Non-Invasive Tests and Procedures
    Map of the Human Heart (PBS)
Pediatric Heart Conditions: Surgical Procedures
Pediatric Heart Network
  Resources for patients in the UK
What is ECMO?
What is Genetic Testing?
   
  Medical Literature
    MEDLINEplus: Congenital Heart Disease
    PubMed: Literature Search Engine (Medical Journals)
   
  Parenting
20 Tips to Help Prevent Medical Errors in Children
    Adolescent Health Transition Project
    Brave Kids
    Caring for the Baby with Congestive Heart Failure
    Create a Care Notebook
    Developmental Tools for Families and Providers
    Emergency Preparedness for Children With Special Health Care Needs
Factors Contributing to Congenital Heart Disease
    Family Developmental Charts
    Feeding Your Infant with Congenital Heart Disease
Growth and Development
Helping Siblings Cope 
    Informed Consent, Parental Permission, and Assent in Pediatric Practice (AAP)
    National Information Center for Children and Youth with Disabilities - State Resources
    Pain, Pain, Go Away: Helping Children with Pain
Preparing Siblings for Surgery
    Sibling Support Project
    The Care Notebook
Transition Resources
Supporting the Dynamic Development of Youth with Disabilities During Transition: A Guide for Families
William's Heart Operation - an online booklet for parents



Organizations/Foundations

United States (National)
  Adult Congenital Heart Association
    Congenital Heart Information Network
    Congenital Heart Public Health Consortium
    It's My Heart (local support groups)
Jordan's Family Foundation
    Little Hearts
    Mended Little Hearts (local support groups)
    National Organization for Rare Disorders
    Saving Little Hearts (Care bags for inpatients)
The Alliance of Genetic Support Groups
Whole Hearts Foundation
 
   United States - For specific Conditions
  Barth Syndrome Foundation
  Cardiac Arrhythmias Research and Education Foundation, Inc.
  CHARGE Syndrome Foundation Inc.
Children's Cardiomyopathy Foundation
  Children's Hemiplegia and Stroke Association
  Hypertrophic Cardiomyopathy Association
  Kawasaki Disease Foundation
  National Marfan Foundation
Parent Heart Watch (Sudden Cardiac Death)
  Pulmonary Hypertension Association
Rocco's Heart (HLHS)
  SADS Foundation
Saving Young Hearts
Spencer Crawford Children's Foundation-Pulmonary Vein Stenosis
The Anthony Bates Foundation (HCM)
  The Noonan Syndrome Support Group
  The Turner's Syndrome Society of the United States
  United Patients Association for Pulmonary Hypertension
  Velo-Cardio-Facial Syndrome Educational Foundation
  Williams Syndrome Association
 
  United States - Research Foundations
         Children's Heart Foundation
         Chloe Duyck Memorial Fund
         Mend A Heart Foundation
         Olivia's Heart Fund
         Saving Tiny Hearts Society
   
  United States - Foundations for financial assistance (national and local)
  Aubrey Rose Hollenkamp Children's Trust
  Cardiac Kids Foundation of Florida
  Emerson Rose Heart Foundation
  Heart of Gold, Inc. (Children's Hospital of WIsconsin)
Hopeful Hearts Foundation
  The Kimberly Anne Gillary Foundation (Michigan)
  Sophie's Heart Foundation
  Spare Key Foundation (Minnesota)
  Spencer's Fund (National)
  Stronghearts - Seamus Carroll Duffy Memorial Foundation
   
  Australia
    Sudden Arrhythmia Death Syndrome - Australian Information Site
   
  Canada
Charge Syndrome
    Canadian Congenital Heart Alliance
  The Canadian Marfan Association
  The Canadian SADS Foundation
  Turner's Syndrome Society
 
  France
    Association Nationale des Cardiaques Congnitaux
   
  Spain
    Josemaria Ordiales Foundation
   
  United Kingdom
    Children's Heart Federation
Max Appeal (DiGeorge, VCFS)
    The UK Cardiomyopathy Association
Little Hearts Matter (Single Ventricle Defects)
  CRY - Cardiac Risk in the Young
  Pulmonary Hypertension Association
The Association for Children with Heart Disorders


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Pulse Oximetry Screening

               Pulse Oximetry Screening for Critical Congenital Heart Disease 
               Newborn CCHD Screening Progress Map (1in100.org)
               CCHD Screening for Parents

 


 Summer Camps

Camp Del Corazon
California
 
Camp Bon Coeur
  Louisiana
Camp Braveheart
Georgia
Camp Kaleidoscope
           Henderson, NC
Camp Meridian
Ossipee Mountains, NH
Camp Odayin
Cross Lake, MN
  Cardiac Kids Camp
              Eva, TN 
  Flying Horse Farms
             Mt Gilead, OH
   
Hope with Heart
P.O. Box 2736
Fair Lawn, N.J. 07410
Phone: 973-728-3854
The Edward Madden Memorial Open Hearts Camp
    250 Monument Valley Road
Great Barrington, MA 02130
Phone 413-528-2229
Heart Camp
Children's Hospital of Pittsburgh
Camp Taylor
Livermore, CA
Victory Junction
Randleman, NC
Camp Moxie
St. Paul, IN
  Camp Mend-a-Heart
            Alamo, NV
   
  Dreams From the Heart Camp
             Buffalo, NY
 

The Boggy Creek Gang
Eustis, FL


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Transplant Resources

Canadian Association of Transplantation
  National Transplant Assist Fund
  Transplant Living
  Transplant Recipients International Organization, Inc(TRIO)
  UNOS Transplant Information Site
  Transweb


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Web Guides

  Healthfinder - U.S. Department of Health and Human Services
  MEDLINEplus: Health Topics

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 Community Resources Links About