Inside Precision Medicine April 1, 2024
Kathy Vuksanaj

By Larissa Warneck-Silvestrin

July 24th of 2006. It’s a date that you never forget.”

On that fateful Monday, Sharon King and her husband were told by a geneticist that their seven-year-old daughter, Taylor, had a rare genetic disease. They asked the geneticist what they could do and where to seek help.

“He shook his head and said, ‘This is such a rare disease, there is not much you’re going to be able to do in her lifetime and very likely your own’,” Sharon King, manager of advocacy and community engagement at Aldevron and co-founder and president of Taylor’s Tale, told Inside Precision Medicine.

The Kings were advised to take Taylor home and make as many happy memories as possible. But...

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