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Rare – A Film Screening in Honor of Rare Disease Day
February 26 @ 3:00 am - March 4 @ 11:30 pm PST
In honor of Rare Disease Day, February 28, AMWA is launching an annual film screening that will focus on the need for increased awareness, research, therapeutics, and advocacy of these uncommon conditions. This issue is of particular interest to AMWA because of the influence of sex and gender and biases that already hinder women from getting access to appropriate and timely treatment.
From Sunday February 26 – March 4, tune in to watch Rare, an empowering film about “an extraordinary mother in a race against time to find a treatment for her daughter’s rare genetic disease.” Directed by Maren Grainger-Monsen, M.D. and Nicole Newnham, this film is not to be missed.
“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.” — Icarus Films
This film is being supported by AMWA’s Vivian E. Shih Graduate Medical Education Fund. Dr. Shih was a renowned expert in the field of metabolic genetics. As a researcher and practitioner in the field of rare diseases, she made a significant impact on the lives of generations of patients. We hope that viewers of this film will consider a small donation to the Vivian E. Shih GME Fund to support AMWA’s work in supporting and inspire future women in medicine and the programs that nurture their professional growth.
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Donna and Ashley Appell in Hospital
