What Would You Do If Your Child Had a 1 in a Million Rare Disease?

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(BPT) - Imagine learning immediately after the birth of your child that they have an extremely rare condition for which your local hospital is completely ill equipped to handle (through no fault of their own). That’s exactly what happened to Clara and her mom and dad. Clara was born with a rare form of cancer that caused a very large tumor to grow on her tongue while in-utero. The hospital couldn’t treat Clara and she was immediately taken to Children’s Mercy Hospital in Kansas City.

Dr. Thomas Curran, Chief Scientific Officer at the Children’s Mercy Research Institute, and Jennifer and Aaron Jensen (Clara’s parents) explain how genomic testing can help save the lives of children not just in Kansas City, but across the globe.


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