Stanford Center for
Biomedical Ethics

Rare

RARE

Watch Rare

RARE, a new feature documentary, follows an inspiring and extraordinary mother in a race against time as she unites a group of isolated people from around the world in a quest to cure her daughter’s rare genetic disease. Together, they discover that community, laughter and hope are some of the greatest therapies.

When Donna Appell learned that her baby daughter Ashley suffered from a rare genetic disorder that would kill her in thirty years, she was told there were less than thirty people in the US who had been diagnosed with it and no one knew where to find them. Realizing that no one was going to help cure “just one child,” Donna set about forming an advocacy group and harnessing the internet to gather as many patients as possible who suffered from Hermansky Pudlak Syndrome (HPS), which includes albinism, blindness, a bleeding disorder and often a fatal pulmonary fibrosis.

Filmed with intimate access over three years, as the clocks tick and the stakes get higher, RARE follows Donna and her advocacy group as they travel to Puerto Rico and throughout the US 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’ daughter Ashley falls for an earnest young man who has the same fatal disease.

Co-Director Maren Grainger-Monsen is a physician and filmmaker-in-residence at Stanford University Center for Biomedical Ethics. She directed Worlds Apart and Hold Your Breath, a large-scale project on cross cultural conflicts in medicine currently used in 63% of US medical schools. She also directed a series of films on end of life issues, The Vanishing Line, which aired on the national PBS POV series, and Grave Words, which won first place in the AMA film festival. She studied film at the London International Film School and received her medical training at the University of Washington and Stanford University.

Co-Director Nicole Newnham co-directed The Rape of Europa, a documentary about the fate of Europe's art treasures during WWII. The Rape of Europa played theatrically in 80 cities across the country, was shortlisted for the 2008 academy award and was nominated for two national Emmy awards. Nicole also co-directed the Emmy-nominated film Sentenced Home, following three Cambodian refugees in Seattle who are deported back to Cambodia after 9/11. She field-produced the Emmy-nominated film Skin, for PBS and National Geographic, and co-produced They Drew Fire, a PBS special about the combat artists of World War II. She graduated from the graduate documentary film program at Stanford University.

 

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