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CHD Family Support

UnitedHealtcare Children's Foundation

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UHCCF is a 501(c)(3) charitable organization that provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan.


Their mission is to improve children’s lives and help families gain access to the care they need through medical grants. We invite you to become a part of UHCCF’s legacy and help us achieve our new goal of awarding 20,000 UHCCF medical grants to children and their families nationwide by 2020!

Mended Little Hearts

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Since 2004, Mended Little Hearts has provided patients and families of children with congenital heart disease many services that directly improve their quality of life. 

Mended Hearts and Mended Little Hearts’ main policy objective is that patients and caregivers have a powerful voice when it comes to making healthcare decisions for themselves or their loved ones.  We support advocacy initiatives that promote truly patient-centered care—empowering patients and their families by providing them with the information they need and ensuring they play the central role in the healthcare team.

Ethan M. Linberg Foundation

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The Ethan M. Lindberg Foundation advocates for unique and collaborative approaches to medical and patient care that make a difference for children and families facing congenital heart disease.


They offer grants to families  and provide long-term housing solutions for families with lengthy hospital stays.


Ethan's mother, Jessica, cofounder of the Ethan M. Lindberg Foundation, has her own website, jessicalindberg.com and shares some of the wisdom and personal experiences she has had connecting with other bereaved Mothers.

National Pediatric Cardiology-Quality Improvement Collaborative

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For the past 7 years, a group of clinicians, researchers, and parents, from across 68 medical institutions have been collaborating to ensure that families of children, who receive a diagnosis of HLHS and other univentricular hearts, have hope.


Together, NPC-QIC and Sisters by Heart, a parent partner organization, have harnessed the power of quality improvement tools and methods to improve the health outcomes for these patients, promote transparency of outcomes data, and enhance communication between clinicians and parents.

World of Broken Hearts

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World Of Broken Hearts focuses on congenital heart defect awareness by showcasing their journey through photographs and storytelling. Here at World of Broken Hearts, we give the gift of high-quality photographs and family portraits so the families can cherish for a lifetime.


Their mission is to be able to raise much-needed congenital heart defect and organ donation awareness that can lead to much-needed CHD funding. We want to be able to travel all over children's hospitals in the U.S. and tell all these profound stories. 


Grants for CHD Families

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Type "Grants for CHD families" into your favorite search engine (Google, Chrome, Bing, etc.), and a list of organizations will pop up that can offer financial assistance to help you and your family during difficult times.



Please feel free to reach out if you are looking for something specific. I wanted to try and give you a little bit of everything to offer the best starting point. 


I hope this helps.


All my best!

My Blog...

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Raising A Child With HLHS

Back in 2009, I began journaling my experiences with Rosemary on my Blog, "Raising a Child With HLHS." Here you can gain some insights from my personal perspective, in real time, on the trials and triumphs of this journey.

http://hlhskids.blogspot.com