My family has been involved with CHIN for 11 years in the capacity of donor, volunteer and client. Our youngest child was diagnosed with Hypoplastic Left Heart Syndrome and has required multiple open heart surgeries, heart catheterizations and other medical interventions since birth. Early on especially, I could not leave home much due to her medical fragility. We did not know anyone else locally who had gone through anything similar. It was a very scary and lonely time, even with support of family and friends. Through CHIN, I came to meet other families going through the same things. If I had questions, fears, joys, I knew I could turn to my CHIN family for answers and support. Truly, I do not think I would have gotten through the early years with my daughter without needing counseling if it hadn't been for CHIN. Today, we have gone several years without more than annual visits. But I still rely on CHIN for information about the latest research and treatments. CHIN members are very well educated about Congenital Heart Disease treatments, as well as school-related issues. Even though my daughter is thriving today, I still rely on CHIN for information and support. Without it, I would be at a loss for information, even though I read many studies. Studies just aren't the same as hearing first-hand accounts of the latest treatments and problems for those with HLHS. CHIN fills that void.
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- EIN 23-2875927
- 609-822-1572
- PO Box 3397 Margate City NJ 08402 USA
- http://www.tchin.org
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- CHDinfonet
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Nonprofit Overview
Causes: Birth Defects & Genetic Diseases, Health, Health Support, Heart & Circulatory System Diseases & Disorders
Mission: The Congenital Heart Information Network, a 501(c)(3) organization created by the mother of a child with complex heart defects, currently publishes the Congenital Heart Disease Information and Resources Web site. Harnessing the power of the Internet as an action-oriented health education and awareness tool, we are one of only a handful of consumer information and support resources for Pediatrics currently available on the Internet that has a commitment to accuracy and reliability, the guidance and assistance of health professionals, and the active participation of our intended audience.
Programs: Parent/Patient Matching Services Online support systems Financial assistance to families/individuals in crisis Funding for local affiliated support groups Printing and distribution of informational materials CHD Awareness Week materials and local activities