30% of children with rare disease will not live to see their 5th birthday.
This reality reflects the inability of our medical system to diagnose and treat children with rare disease. While we have made significant progress, there is clearly a long way to go. In today’s world, where technology advances at a breakneck speed, it is unacceptable that we have been unable to find a way to keep these children alive.
To put this into perspective, I performed some back-of-the-napkin math. According to the CDC (link), 1 in 500 newborns died before their 1st birthday due to a rare disease. In other words, 0.2% of all children who enter into the world never have a chance to live out their dreams. While 0.2% may seem small, if you apply it to the US population, 700,000 people could have been alive today if we had means to cure their rare disease. To see what we lost out on, I applied these numbers to several professions (numbers from Department of Labor Statistics).
Below, see what these children could have achieved, given the chance:
We need to change the thinking that these diseases are rare. Imagine the impact if 1,700 police and firefighters suddenly disappeared. If we suddenly lost 8,000 doctors and nurses or 85 professional actors and musicians. God forbid a congressman disappears. Can you imagine the outcry?
These children have so much to offer the world. We just need to give them the chance.
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