Produced and Directed by Maren Grainger-Monsen and Nicole Newnham
Meet Donna Appell, an inspiring and extraordinary mother in a race against time as she unites people from around the world in a quest to cure a rare genetic disease – a cure that could save her own daughter’s life.
As formerly isolated patients with albinism, blindness, and the same fatal syndrome join together, they discover that community, laughter and hope are some of life’s greatest therapies.
Filmed with intimate access over three years, as the clock ticks and the stakes get higher, RARE follows Donna in a race to fill a drug trial they hope could prolong her daughter's life. Along the way we become part of a sweet love story when Donna’s daughter Ashley falls for an earnest young man who has the same disease.