RARE Village Presents


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.

“I really want to help make a fundamental difference in families’ lives by altogether eliminating the problem in as many cases as we can.”

- Dr. Berge Minassian

"Do I want to be doing science for the sake of doing science, or do I want to apply it to a directed cause? And I think the connections I've made with some of the families and the kids made it crystal clear to me that I knew which way I had to go."

- Dr. Steven Gray

"It's the most unfair thing in the world," said Gray. "If the parents don't become advocates, and if they don't become funders, then it's just not gonna happen."

- Dr. Steven Gray

meet us

OSTL production team

Storytelling is at the core of everything we are.

RARE Village

Executive Producers

Luke Boney

Director of Photography

Brandon Carmichael


Justin Ransom


Raelyn Munneke