영화 · 56분

RARE

《RARE》은(는) —년 영화입니다(다큐멘터리). 《RARE》의 상영 시간은 56분입니다. 현재 대한민국에서 《RARE》을(를) 볼 수 있는 합법 시청처가 알려져 있지 않습니다. 나중에 다시 확인하거나 국가를 변경해 보세요.

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📍 대한민국

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줄거리

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.