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https://npcqic.org/resources/suggested-organizations-can-provide-help
Midwest Heart Connection’s mission is to support individuals affected CHD by providing access to others with congenital heart disease, raise awareness of CHD in the community and raise and provide funds for pediatric cardiology research, education and treatment resources so that more children with heart defects will survive, live longer, and lead an improved quality of life.
https://www.childrenscolorado.org/doctors-and-departments/departments/heart/resources/hlhs-resources/
The Congenital Heart Information Network is a national organization that delivers reliable information, resources, advocacy, financial assistance and support for families and adults. Check out their Facebook page to see what is being done in the medical field to help combat congenital heart disease, and read other stories that will inspire and encourage you through your own battle.
http://www.sistersbyheart.org/
Mission Statement Sisters by Heart provides support, education, and empowerment to families affected by Hypoplastic Left Heart Syndrome (HLHS) - from initial diagnosis and beyond. National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC)
https://www.disability-benefits-help.org/compassionate-allowances/hypoplastic-left-heart-syndrome-and-social-security-disability
Hypoplastic Left Heart Syndrome and Your Social Security Disability Case. Most disability applicants assume that their application for Social Security Disability benefits will be automatically approved because their condition is included in the SSA's Compassionate Allowances Listings. This is not necessarily the case.
https://www.facebook.com/HLHS-Support-Group-118783084859462/
HLHS Support Group. 191 likes · 1 talking about this. Hello, our names are Ryan and Miranda, we had a son (Wyatt), born 2/11/10 with HLHS. He unfortunately passed on August 7th, 2010 due to...Followers: 199
http://hopeful-hearts.org/whatwedo.html
Non-profit support network that provides information and resources to families with congenital heart defects. Also works with the medical community to share up-to-date information and generate public awareness to promote early detection of CHDs. CHD H.E.A.R.T: …
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5313512/
Nov 02, 2016 · The management of hypoplastic left heart syndrome (HLHS) has changed substantially over the past four decades. In the 1970s, children with HLHS could only be provided with supportive care. As a result, most of these unfortunate children died within the neonatal period.Cited by: 9
https://www.disabilitybenefitscenter.org/compassionate-allowances/hypoplastic-left-heart-syndrome-social-security-disability
Filing for Social Security Disability with Hypoplastic Left Heart Syndrome. If your child has been born with Hypoplastic Left Heart Syndrome it may help to know that he or she will automatically qualify for Social Security Disability benefits because the SSA has recently determined the condition meets the criteria for Compassionate Allowance ...
https://www.littlehearts.org/
Little Hearts, Inc. is a national organization dedicated to providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
https://www.chop.edu/conditions-diseases/hypoplastic-left-heart-syndrome-hlhs
Hypoplastic left heart syndrome (HLHS) is a severe congenital heart defect in which the left side of the heart is underdeveloped.. In a normal heart , the heart's left side has the job of pumping oxygenated blood into the aorta, the large artery that carries blood to the body.In a child with HLHS: The mitral valve, which separates the two left chambers of the heart, is too small or completely ...
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