One Of The Few: Life With A Rare Disease | Connecticut Public Radio

One Of The Few: Life With A Rare Disease

Dec 18, 2020

It’s estimated that there are as many as 7,000 different known rare diseases in the world. In the The U.S., it’s defined as any disease or condition that affects fewer than 200,000 people.

Today, you’ll meet two of them, and their mothers.

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  • Erin Rupolo is the Mid-Atlantic Regional ChairPerson for the Williams Syndrome Association and she's a Special Education Paraeducator in Kensington, MD
  • Sophie Rupolo is 12 years old and has Williams Syndrome
  • Allyson Buck of Greenwich, Connecticut is Sam's mom and the co-founder of the VWM Families Foundation
  • Sam Buck is 10 years old and has Vanishing White Matter Disease

Catie Talarski contributed to this show.