CDH & Marfan Syndrome are considered rare disorders.
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000 people. A disease or disorder is defined as rare in the U.S.A. when it affects fewer than 200,000 Americans at any given time. (Source: "Rare Disease Day" page)
In reality, both conditions are under diagnosed & under reported as some with mild forms of each can live their entire lives not aware they have the condition, and when deaths occur it may be due to complications that get reported as the cause of death.
1 out of every 2,500 babies are born with CDH every year, and of those born 50% will die. With the cause unknown, we have no idea how to stop it.
1 out every 5,000 people are believed to have Marfan syndrome and 1/2 don't even know it. For those who do know, the majority can be managed so they can lead full lives, but for those undiagnosed a weak or damaged aorta can be a walking time bomb waiting to go off when they least expect it!
Awareness is the key and both these conditions need all the help they can get! Please consider volunteering or donating to them in memory of Jayden & for all the others!!
Donate in Jayden's Memory
CHERUBS
http://www.cherubs-cdh.org/donate
National Marfan Foundation Memorial
http://tinyurl.com/MarfanDonate
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