Movie · 56 min

RARE

RARE is a — movie (Documentary). RARE runs 56 minutes. There is currently no known legal streaming option for RARE in United States. Check back later or switch your region.

Where can I watch RARE

📍 United States

No legal streaming option is known in United States yet. Try another region from the menu.

Streaming data provided by JustWatch.

Plot

RARE follows an extraordinary mother in a race against time to find a treatment for her daughter's rare genetic disease. When Donna Appell learned that her infant daughter Ashley had an extremely rare genetic disease that would kill her in thirty years, she set out to track down every person in the world with Hermansky-Pudlak Syndrome (HPS). Realizing that no one was going to help cure "just one child," Donna forms an advocacy group and travels throughout the US and Puerto Rico to gather as many patients as possible who suffer from HPS, which includes albinism, blindness, a bleeding disorder and often a fatal pulmonary fibrosis. By the time Ashley turns twenty, Donna, under insurmountable odds, has achieved something incredible: the advocacy group she started is now in the hundreds and the NIH has agreed to start a clinical trial.