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CHD Organizations

Source:  CHD Organizations    Tag:  rare congenital heart defects Since learning about Brent's diagnosis, I have learned a lot about congenital heart disease that I never knew before.  Information such as:

- Congenital heart defects are the worlds #1 birth defect.
- Congenital heart defects are the leading cause of infant death in the U.S.
- In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
- Only 1% of money contributed to the American Heart Association is allocated for congenital heart disease.

Since congenital heart defects only occur in about 1% of pregnancies, I understand why many people are simply uninformed on the topic.  If your baby is born heart healthy, it's not something you have to worry about.  It's not something I thought about or knew anything about prior to Brent's diagnosis.  However, being the parent of a heart baby makes me realize how critical this area of medicine is - it is still killing too many of our babies and is vastly underfunded.

If you are looking for ways to get involved in CHD awareness, a couple of the organizations I endorse are: The Children's Heart Foundation

Over 75% of this organization's donations go towards CHD research and research-related education.  They have raised over $6.1 million for CHD research since 1996.  They also have a wealth of resources for families impacted by CHD.  You can learn more about them at their website:  http://www.childrensheartfoundation.org/ Mended Little Hearts

The Mended Little Hearts program works nationally and in communities to support children with congenital heart defects and their families.   The Mended Little Hearts' mission is to provide hope and support to children, families and caregivers impacted by congenital heart defects in order to extend and improve quality of life.

Some of the things this organization does is link families together for support, host group meetings, provide support services to families, initiate educational and awareness meetings in the communication, and participate in CHD advocacy for things like newborn screening and research.  You can learn more about them at:  http://mendedlittlehearts.org/mlh.htm



Medical Organizations

Neurodevelopmental Organizations

Neurofibromatosis Organizations

Organizations and institutions
