The ordeal of rare diseases is a multi-layered issue comprised of various difficulties, from seeking and obtaining a diagnosis to treatment to living with and caring for someone, all whether the disease is terminal or not. As John Beder and Lainey Moseley explore in their documentary RARE: A Rare Disease Revolution, the whole prospect is made all the more unfortunate considering that those most disproportionately dealing with them are children and their caregivers.
As the film explains, through interviews with parents, doctors, and other experts, diseases are hard to get diagnosed and can take a long time because they are, well, rare. Doctors often don’t have a point of reference if they haven’t seen a patient with it previously. The film presents the stories of six families, and each story tugs at one’s heartstrings. Nothing is sugarcoated, with parents speaking to leaving work and in some cases their dream jobs to devote their lives to trying to make a difference in the lives of their kids and the kids of tomorrow. Their struggles, though unique, are relatable to anyone who is or has been in the position of taking care of an ill child.
The film spends an appropriate amount of time describing the admirable efforts of people to make a child’s situation better. These efforts include raising awareness of a disease to showing the medical and technical innovations that are in the works, offering families hope and comfort as the film’s parting words encourage early screening and diagnosis when possible. Some of the treatments discussed include ASO therapy, repurposing of FDA-approved drugs, and gene therapy. The filmmakers also address their privilege in being able to leave work and devote themselves to fundraising and advocacy full time, highlighting the particular healthcare barriers faced by people of color and those of lower income brackets who are unable do the same.
RARE also underscores this common feeling of dismissal and resignation when it comes to something that’s considered “rare”. One hears that an illness can be or is terminal and figure there wasn’t much we could have done about it; this provokes the tragic notion of “too rare to care”, a sentiment the directors obliterate with this important film. Four stars. Would recommend.
Which library audiences should attend a screening of this documentary?
This educational film serves public library programming by raising awareness of an especially emotionally challenging topic. Whether they’re in a similar situation to the film’s families or not, parents and caregivers of children will find something to discover and appreciate by watching RARE in a community setting. It could also be shown as part of a presentation given by folks who are advocating for those living with rare diseases.
What academic course subjects would benefit from showing RARE?
Given its wide range of applicable subjects, this film is a valuable resource for both academic librarians and professors teaching with film. It could provide insight into the lives of parents for would-be teachers studying early childhood development and education. In the science subject vein, this film would be informative for students who are in biology, health science, biochemistry, and medical-related classes. The general audience nature of the film makes it suitable to use in classrooms from the high school to graduate level.
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