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Archives for: February 26th, 2021

Jason and Nola’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 26, 2021

I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect of daily life. I find myself having to be more attentive and always “on”… Read More