Helpful Links

GENERAL INFORMATION ABOUT CONGENITAL HEART DISEASE AND SURGERY

About Kids Health
This website has comprehensive information on types of congenital heart defects, types of procedures, and surgeries. It was developed by Sick Kids in Toronto in partnership with BC Children’s Hospital and other children’s hospitals.

BC Children’s Hospital pre-heart surgery tour
This video gives a tour and overview of heart surgery at BC Children’s Hospital.

Heart and Soul: A Guide to Congenital Heart Disease
This guide was published by the Heart and Stroke Foundation and has extensive information on congenital heart defects.

CANADIAN HEART ORGANIZATIONS AND PROGRAMS

The Canadian Congenital Heart Alliance
This national organization has extensive information and resources on congenital heart defects in adults. They also have links to many cardiology research articles.

Canadian Adult Congenital Heart Network
The CACH Network was created to pool the knowledge and experience of congenital heart disease professionals in Canada to help strengthen their skills and knowledge of the discipline, and to create a community of individuals committed to caring for adults with congenital heart disease—and their families.

Western Canadian Children’s Heart Network
The WCCHN coordinates and integrates care for pediatric cardiac patients across the western Canadian provinces. Their website has good information and resources.

BC Inherited Arrhythmia Program
A provincial heart program that provides state-of-the-art care to British Columbians with a history of an inherited arrhythmia (or inherited heart rhythm condition), an unexplained sudden cardiac arrest, or a family history of sudden unexpected death.

SADS Foundation
Resources and support for patients/families living with inherited heart rhythm conditions and for those having lost a loved one suddenly.

PROVINCIAL HEART ORGANIZATIONS

The Children’s Heart Society (Edmonton, Albert)

Heart Beats (Calgary, Alberta)

Little Hearts Family Group inc. (Saskatchewan)

Circle of Hearts Family Support Network (Manitoba, Nunavut, parts of NW Ontario and Eastern Saskatchewan)

Heart Defects Society of Windsor and Essex (Ontario)

Cardiac Kids in Support of Sick Kids Foundation (Toronto, Ontario)

Braveheart Support Society (Atlantic Canada)

AMERICAN AND INTERNATIONAL ORGANIZATIONS

Adult Congenital Heart Alliance (American)
This American organization has many resources about CHDs, research, and advocacy for the adult congenital heart community.

Children’s Heart Foundation (American)
www.childrensheartfoundation.org/
This foundation provides funding for congenital heart disease research. They have many resources on their website.

Children’s Heart Information Network (American)
An American national organization that provides information, advocacy, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, and adults with congenital heart defects.

Corience (European)
This European website for families, patients, and doctors, provides in depth information about congenital heart defects including diagnosis and treatment, and research. They have very good articles for and parents, teenagers, and adults.

Kids with Heart National Association for Children’s Heart Disorders (American)
This site has an extensive list of books and links to the latest research.

Mended Little Hearts (American)
Mended Little Hearts is an American support program for parents of children with congenital heart defects and heart disease. Their website has many helpful resources and webinars.

Pediatric Heart Network (American)
Pediatric Heart Network site lists some specialized heart websites that we should maybe also include:

RESOURCES FOR TEENS

On TRAC
A provincial initiative to help youth, young adults, and families, and health care providers in British Columbia work together to ensure a smooth, safe, continuous, developmentally appropriate transition from pediatric to adult health care serves. Their tool kit section has many tips for teenagers on how to prepare to take charge on their own health care.

IHeartChange

A fabulous website focused on helping young adults make the move to adult care.

British Heart Foundation, YHeart
This British website has extensive information specifically for teenagers.

Children & Youth Grief Network

Connecting individuals and organizations who provide services and resources that benefit children and youth who are grieving.

Corience
This European website has an extensive collection of articles for teenagers.

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