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From the Fanlight Collection
Directed by Maren Grainger-Monsen, M.D. and Nicole Newnham
Stanford Center for Biomedical Ethics
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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.

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Filmed with intimate access over three years by award-winning filmmakers Maren Grainger-Monsen and Nicole Newnham, RARE follows Donna Appell and her daughter Ashley into the world of clinical research, patient advocacy, and through the course of a NIH clinical trial as Ashley falls in love for the first time.

"This excellent program shows students the challenges of a rare genetic disorder while demonstrating what can be achieved by one motivated person willing to do whatever it takes to energize people in a quest for a common goal." - NSTA Recommends

“Here’s the irony: there are a lot of those patients [with rare diseases]. While the number of people who suffer any specific disease is small, more than 30 million Americans are thought to have a rare disease. And though their symptoms and prognoses may be vastly different, they all share the isolation and lack of medical support endemic to suffering a disease few people have and no one knows anything about.” —Erin Allday, San Francisco Chronicle

Best Feature Film, Brooklyn Girl Film Festival 2012
Special Jury Award, Long Island Film Festival 2013
Official Selection, 2014 Association of Clinical Research Professionals Conference
Official Selection, 2013 DIA National Conference
Official Selection, 2013 Arizona Science Center
Official Selection, 2013 Bay Area Science Festival
Official Selection, 2012 Seattle Science Festival
Official Selection, 2012 Cannes Film Market
Official Selection, 2012 National Institutes of Health Science Education Conference

56 minutes
Closed Captioned
Release: 2014
Copyright: 2012
Sale — Colleges & Universities: $248
Public Libraries & High Schools: $40

This DVD is sold above with a license for institutional use and Public Performance rights. It is also available for home video use, click here.

Subject areas:
Bioethics, Biology, Closed Captioned, Fanlight Collection, Health Care Issues, Health Issues, Medicine

Related Links:
The Films of Maren Grainger-Monsen

Related Titles:
In The Family: Joanna Rudnick tested positive for the BRCA gene, a familial mutation that increases the odds of getting breast and ovarian cancer, now she takes on the chaotic world of predictive genetic testing and the choices she must make.

Tracked Down by Our Genes: Explores the new possibilities and dangers created by the Human Genome Project's decoding of human DNA.

Worlds Apart: A series on cross-cultural healthcare. Four films raise awareness about how cultural barriers affect patient-provider communication and other aspects of care for patients of diverse backgrounds.

Hold Your Breath: A devout Muslim immigrant faces possible death from stomach cancer but cultural and linguistic confusions complicate his treatment in an American hospital.

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Last Updated August 17, 2015
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