Heart Disorders & Defects

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Heart Defects"

Who to Contact

CHASER (Congenital Heart Anomalies Support, Education, and Resources)
2112 North Wilkins Road
Swanton, Ohio 43558
phone# (419) 825-5575
fax # (419) 825-2880
E-mail: CHASER@compuserve.com
Web: http://www.csun.edu/~hfmth006/chaser/

CHASER specializes in children born with congenital heart defects (CHD), "in utero to adult", and also acquired heart disease in infants and children. The primary purpose of the organization is to offer parents, professionals and patients, resources that may help these individuals in their dealings with financial, educational, medical, emotional and other issues that may concern them. CHASER is in essence working to fill a void which exists for many. CHASER collects information nationwide from a variety of clearinghouses, organizations, professionals, and the family. CHASER itself can be a clearinghouse of information for all. From heart defects to syndromes accompanied by heart disorders - from feeding to surgery and beyond - CHASER strives toward finding and linking the family to the "help".

The organization maintains the national 'heart' parent/child database of families with congenital heart disease. By using information furnished by families and professional in various fields, they in turn are able to provide parents the opportunity to connect with others who truly understand their concerns and fears - CHASER's Parent to Parent Networking. They employ some of the most precise "matching" capabilities for CHD families found anywhere. Close similarities in condition and experience are considered a prerequisite to "understanding". While at the same time, "new" parents can find not only understanding, but resources and coping skills as well. Isolation and loneliness can be lessened or alleviated by CHASER's networking. They primarily work on a "One-to-One" basis when locating helpful information or contacts, with each case looked upon as being unique.

Children's Heart Society
Box 52088
Garneau Postal Outlet
Edmonton, Alberta T6G 2T5
780-454-7665
childrensheart@shaw.ca
http://www.childrensheart.org/

The Children's Heart Society is a non-profit, non-government funded charitable organization that is totally operated by volunteers and supports families of children with heart disease. Our goals are: To work toward the day when no child will die from heart disease. To ensure the best possible care for children suffering from heart disease. To improve the quality of life for children and families living with heart disease. To educate the public about heart disease in children their many needs.

We have monthly support meetings, a parent referral list, a bi-monthly newsletter, bereavement support, and numerous other services, the most important being solid support for families facing a life with a "heart child."

Kids with Heart
1578 Careful Drive
Green Bay, WI 54304
1-800-538-5390 (phone/fax)
1-920-498-0058 (phone/fax)
E-mail: michelle@kidswithheart.org
Web: http://www.kidswithheart.org/

Their main mission is to provide support, information, and education for the families of the children already living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.

Adult Congenital Heart Association
6757 Greene Street
Philadelphia, Pennsylvania, 19119
United States
(215) 849-1260
info@achaheart.org 
http://www.achaheart.org 

The Adult Congenital Heart Association (ACHA) is a nonprofit organization which seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community.
 

Where to Go to Chat with Others

• PTCHD - Parents of Teens with CHD
  An online support group and discussion forum for parents of teens and young adults with congenital heart defects and interested health professionals.

• PDHeart
  A very active online support group and discussion forum for parents, family members and adults with congenital heart defects. If you have a child with CHD, if you have CHD yourself, or if you are a concerned individual, please join us.

• CHDL: Congenital Heart Disease Loss Support
  An online support group specifically for families who are coping with the loss of a loved one.

• HTX - Heart Transplant Support Group
  A forum for support and information sharing for families and individuals dealing with heart or heart-lung transplants due to childhood-onset heart disease. Subscribers facing the possibility of transplant or otherwise interested in the issues surrounding transplanted survivors of childhood-onset heart disease are also welcome.

• HLHS - Hypoplastic Left Heart Syndrome
  An online support group and discussion forum for families of children with Hypoplastic Left Heart Syndrome and interested health professionals.

• Congenital Heart Defect Support
  This group is about raising and supporting each other who have a child/adult with a Congenital Heart Defect. We welcome you and glad that you came by to participate and support one another. You must join to be able to post to this group. Our settings are such to avoid spam problems.
   
• Down's Heart Group
  A contact point for families who have a member with Down's Syndrome and associated congenital heart disease. Support and information for those whose child is facing heart surgery, who has had surgery, those whose condition is inoperable, and those families who are bereaved.

Learn More About It

• Congenital Heart Disease Online Handbook

• Patent Ductus Arteriosus (PDA): A Parent's Guide

• Glossary of Childhood Onset Heart Disease

• Congenital Heart Defects in Children Fact Sheet

• The Heart: An Online Exploration

• Understanding Pediatric Cardiomyopathy

Web Sites

• Children's Cardiomyopathy Foundation A non-profit organization dedicated to the search for a genetic cause and potential cure for pediatric cardiomyopathy. In addition to supporting critical scientific and medical research, C.C.F. also promotes physician education, public awareness, patient support, and advocacy for affected children and their families.

• Congenital Heart Disease Information and Resources
  C.H.I.N. is an international organization that provides reliable information, support services and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.

• Imperfect Hearts Resource Page
  The goal of ImperfectHearts.Net is providing support & information, reaching for the day when all cardiac defects become the past. Public awareness is the key.

• Adult Congential Heart Association
  National support organization for adults with congenital heart disease.

• Congenital Heart Defects .Com
  This site is devoted to providing information to members of the world-wide congenital heart defect (CHD) community.

• The Children's Heart Foundation
  The Children's Heart Foundation funds the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.

• Congenital Heart Research Center
  The CHRC is dedicated to understanding the role of fetal heart development in congenital heart defects and also how fetal heart development and adult heart disease are linked. The CHRC is committed to the education of physicians, health professionals and the public with respect to the latest findings in congenital heart disease research.

• American Heart Association

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Last Updated 12/06/2006 by rowley@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_hart.htm