Founders and Advisory Board

Congenital Heart Defect Resources

If you know of other resources that should be listed, please Email me at: mailto:sdove1@alltel.net Thanks!

Click on one of the catagories below to go directly to that section.

Medical Information

• - for Professionals
• - for Parents and Others Interested in CHD Information

Suppport Groups

• - for Adults with Congenital Heart Defects
• - for All Ages with CHDs
• - Bereavement Support Groups

CHD Foundations

Other CHD related sites

Listservs and Webrings

Camps

Transplant Information

Medical Transport - Air Ambulance, etc.

Care Notebook
The Care Notebook and Care Organizer are tools for families who have children with special health care needs. Families use Care Notebooks to keep track of important information about their child's health and care. This makes it easier to find and share key information with their child's care team.

For Anesthesiologists and CRNAs

Anesthesiology Online
Anesthesiologists and Clinical Registered Nurse Anesthetists would benefit from knowing about how they can get CME credit online at this site.

Anesthetic Management of Pediatric Patients with Hypoplastic Left Heart Syndrome for Non-Cardiac Surgery
by Frank A. Jaworski, BSN, RN

Continuing Education Information for Nurses:

The American Association of Critical Care Nurses
This organization provides many articles and CEUs online.

Cardiac Development - Nursing CEU
This animated lesson helps one understand what some common cardiac malformations look like.

Pediatric and Neonatal Resources
for only $8/contact hour, nurses can earn CEUs in a variety of areas. There are also links to other nursing related sites.

Continuing Education Information for Doctors:

Doctor's Guide - Congress Resource Centre

Ed Credits Continuing Education Credits for medical professionals.
Ed Credits is designed to help professionals with their busy and demanding schedules. We offer self-paced, high quality on-line courses which can be taken from any on-line computer.

Fetal Echocardiography
This two-day program provides a comprehensive introduction to the science and practice of fetal echocardiography.

Healthstream
HealthStream, Inc., based in Nashville, TN, is the leading provider of e-learning solutions to the healthcare industry.

NASPE 2001 - 22nd Annual Scientific Sessions
Medscape Conference Coverage, based on selected sessions at the: NASPE 2001 - 22nd Annual Scientific Sessions (up to 4.5 hours of AMA PRA category 1 credit) CME -- Valid for credit through June 12, 2002

General CHD Information For All Medical Professionals:

Echo UK - the Tiny Tickers Charity
Our aims are to improve the understanding, early detection and treatment of cardiovascular disease in babies and mothers through research, training and education. echo uk is an independent, international charity, led by concerned parents and supported by medical experts in the UK and Europe.

European Society of Cardiology
For doctors, nurses and others in the field of cardiology abroad, this site might be of interest: It features scientific information, public information and information about upcoming cardiology conferences.

FreeBooks4Doctors
Over the next few years, many important medical textbooks will be available online, free and in full-text. The unrestricted access to scientific knowledge will have a major impact on medical practice. FreeBooks4Doctors is dedicated to the promotion of free access to medical books over the Internet.

The Heart Institute for Children
The Heart Institute for Children (THIC), founded in 1987, is dedicated to clinical excellence, education and research in the field of congenital and acquired heart disease in children and young adults. Clinical care includes the latest and the most advanced technology. Research is directed towards clinical cardiology as well as basic molecular biology.

Heart Defects Online Message Board
(This used to be HeartCenterOnline) If you find yourself parenting a child with a heart defect, then you could probably use a friendly "ear" to talk through the various issues you face. You'll find a warm and comforting community here.

Hypoplastic Right Heart Syndrome
A page by The Heart Institute for Children

In the News
Pediatric Cardiology Online, sponsored by the New York University School of Medicine, has composed a nice website with pertinent articles for the CHD community. This is a site helpful for parents and professionals alike.

Library of Heart Diagrams
The Royal Children's Hospital Cardiology Department in Melbourne, Australia has a terrific site with diagrams of heart defects, a Frequently Asked Questions page, and much more.

Medical Breakthroughs -- Medical News and Health Information
This is the latest news covering many different facets of medicine including children's health and cardiovascular health.

Medical journals and News
Links to medical journals and medical news

Medical Matrix
Medical Matrix is a free directory of selected medical sites on the Internet. Each site listing has been carefully evaluated by reviewers from our panel of physicians and medical librarians. Medical Matrix lists only those sites that meet our criteria for information quality and site usability, with an emphasis on usefulness to healthcare practitioners.

Multilingual Glossary of medical terms
Here's a great site for professionals and others in the CHD community who may need an understanding of medical terms in more than one language.

Pediatric Cardiology and Congenital Heart Disease
Links, Links and more links to medical information, diagrams, and more.

PediHeart Website
This is the PediHeart webpage run by Dr. Hennein at Loyola.

SADS Foundation (Sudden Arrhythmia Death Syndromes)
Our Mission is to save the lives of children and young adults who are genetically predisposed or otherwise susceptible to sudden death due to cardiac arrhythmia and to provide education and support to families and the medical community who are dealing with these disorders. The SADS Foundation is dedicated to providing information, assistance & hope.

General CHD Information For Doctors:

32nd Bethesda Conference: Care of the Adult With Congenital Heart Disease
Doctors may be interested in this site hosted by the American College of Cardiology. There are opportunities for continuing education, information on the annual scientific session, media, journals, news and more.

3-D Visualization of Congenital Heart Disease
This site features a congenital heart disease overview; patient scan protocol; case studies and examples in literature.

Cardiac Surgery Information HomePage
This site offers heart surgery information, including slide shows of surgical procedures like mitral valve repair, aortic valve and coronary artery bypass surgery, information re. surgical results and patient services.

Cardiothoracic Surgery Network

E-Medicine: Pediatric Cardiology

Heart Surgery Forum
Official Publication of the International Society for Minimally Invasive Cardiac Surgery

PubMed database for medical literature
Links to journal articles related to congenital heart defects.

Pediatric Cardiology Almanac
Multimedia Educational Resources about Williams Syndrome, Tetralogy of Fallot, total anomalous pulmonary venous return (TAPVR), pulmonary stenosis and corrected transposition of the great arteries (C-TGA), along with a Textbook of Angiographic Anatomy.

General CHD Information

The Hospital for Sick Children in Toronto, Canada has developed a Web site that explains and illustrates how the body works using colourful animations and easy-to-read text. The site is named Child Physiology: How the Body Works and it can be seen at http://www.sickkids.ca/childphysiology/ .
Currently the site covers the normal function of several body organs and systems. In particular, there are sections about the Heart ( http://www.sickkids.ca/childphysiology/cpwp/Heart/heartIntro.htm) and Genetics ( http://www.sickkids.ca/childphysiology/cpwp/Genetics/geneticsintro.htm), which would be especially pertinent to the users of CongenitalHeartDefects.com . In addition, they have developed an educational module on Patent Ductus Arteriosus which can be seen at http://www.sickkids.ca/childphysiology/pda/intro.html. We are continually expanding the site, and in future we plan to add sections covering many more conditions, including ASD, VSD, and other congenital heart defects.

Conditions and Diseases Health Directory

AllHealthLinks.com

Medicaid 101: Prepare Yourself For The Debate
Also available on this site is the fact sheet: Medicaid at a Glance

Baby Hearts Press
Provides links to other CHD sites; a Message Board, chapters from Hypoplastic Left Heart Syndrome: A Handbook for Parents and essays from The Heart of a Mother; Book Reviews of CHD-related books and more!

British Heart Foundation
This is the British version of the American Heart Association.

Cardiac Disease in Children
The American Heart Association's information on CHDs.

Congenital Heart Defects in Children Fact Sheet
From the American Heart Association

DiseasesConditions.com
Directory for all diseases and conditions information - cancer, diabetes, mental health, allergies, depression, anxiety and more.

Focus: Families of Children Under Stress
FOCUS offers emotional, informational, and physical support to families with children with disabilities or ongoing medical needs.

Fontan operation - Pediatric heart surgeon helps you understand the Fontan Operation
Easy-to-understand info on the Fontan operation from a specialist pediatric heart surgeon. "Looking for reliable info about the Fontan operation? I've been writing about the Fontan since 1996"

Heart1.com
Heart1.com offers comprehensive cardiac care information, accomplished through news features, technology reports, searchable databases of the most prevalent venous conditions and possible treatments, as well as interactive tools where patients can tell their stories and ask experts questions.

How the Heart Works: The Heart House
Great site with descriptions and pictures of how the heart works from the Children's Heart Institute.

March of Dimes: Congenital Heart Defects