CHIN: For Families

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

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
		CHD and Pregnancy
		Links to articles in medical journals
		Especially for Patients - ISACCD
		Living with Heart Failure: Information and Support for Patients and Caregivers
		Parents and ACHD'ers Speak Out!
		Pregnancy and Congenital Heart Disease
		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
		A Parent's Guide to Understanding 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)
		LD Basics
		Sensory Integration Disorder
		Your Child�s Evaluation
		The Differences Between IDEA and Section 504
		The Center for Health and Health Care in Schools

	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
	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 Care Financing Administration
	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
	The Health Insurance Portability and Accountability Act (HIPAA)
	RxAssist:Patient Assistance Program Center
	SSI: Your Right to Appeal

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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
		Medline Plus: Drug Information
		Non-Invasive Tests and Procedures
		Map of the Human Heart (PBS)
		Pediatric Heart Conditions: Surgical Procedures
		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
		Caring for the Baby with Congestive Heart Failure
		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)
		Aubrey Rose Hollenkamp Children's Trust
		The Alliance of Genetic Support Groups
		Brave Kids
		Chloe Duyck Memorial Fund
		Heart of Gold, Inc.
		The Kimberly Anne Gillary Foundation
		Mend A Heart Foundation
		National Information Center for Children and Youth with Disabilities
		National Organization for Rare Disorders
		Olivia's Heart Fund (Research)
		Aubrey Rose Hollenkamp Children's Trust
		Ryan Andrew Kaiser Memorial Foundation
		SADS Foundation
		Saving Tiny Hearts Society
		Spare Key Foundation
		Starbright Pediatric Network
		Stronghearts - Seamus Carroll Duffy Memorial Foundation
		The Braveheart Foundation
		The Children's Heart Foundation (CHD Research)

	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
		Pulmonary Hypertension Association
		SADS Foundation
		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

	Australia
		Sudden Arrhythmia Death Syndrome - Australian Information Site

	Canada
		Charge Syndrome
		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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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

	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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	Disclaimer: The contents of this site are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns. Created and maintained by Mona Barmash and Uwe Baemayr for The Congenital Heart Information Network. Exempt organization under Section 501(c)3 Copyright �1996 - 2009 C.H.I.N. all rights reserved TX4-390-685