One Shot to Live
The One Shot to Live Documentary Series & The Rare Village Blog
One Shot to Live
Single-gene therapy may be the greatest hope for thousands of children with rare diseases. But the greatest challenge is time, or the lack of it. In an increasingly faster-paced world, the parents of these three children fight to save lives all while seeing the life around them through an entirely new lens; a lens that lets them live each day to the fullest.
One Shot to Live is a documentary series created by the Rare Village, to tell the stories of the journey to creating a treatment while raising a family confronting a terminal childhood diagnosis.
Blog
Zebra Race for Rare Kids – 2024!
Join us in February 2024 to celebrate rare disease month with the annual Zebra Race for Rare!
Why I became a teen rare disease advocate
Why I became a teenage rare disease advocate My name is Aubrey, I am a senior in high school, and I am a rare disease
Welcome to Rare Village!
Welcome to our village. We’re so glad you’re here! Kasey and I started the Rare Village to help families find their path through the rare