Rare disease is anything but rare. As many as 7,000 rare diseases affect 400 million people globally. The vast majority are not well understood, and less than 5% have approved treatments. Yet worldwide, patients and their loved ones are meeting these challenges head on. They are going back to school to become scientists; they are organizing research communities and building patient registries; they are even selling cupcakes to start research centers. This short film celebrates eight of these stories -- and calls out the Chan Zuckerberg Initiative’s commitment to supporting patients and rare disease communities in their quest for cures.
The numbers are striking: as many as 7,000 rare diseases affect 400 million people globally. The vast majority are not well understood, and less than 5% have approved treatments. Yet worldwide, patients and their loved ones are meeting these challenges head on. While these rare diseases are different, patients are all in the same fight -- pushing forward for better research, care, and progress in understanding disease. This is the urgency and need, the hope, and progress we sought to convey in the short film, Rare As One: 7,000 Rare Diseases, 1 Fight.
We decided the best way to communicate the urgency and importance of this work was to share the stories of patients themselves, that are driving the research. This film celebrates eight of these patient stories -- showing viewers why the Chan Zuckerberg Initiative has committed to supporting patients and rare disease communities in their quest for cures, through the Rare As One Project. Viewers hear directly from those who fight daily: Emily Kramer-Golinkoff, Dr. David Fajgenbaum, Dr. Maria Kefalas and her daughter Cal, Nasha Fitter and her daughter Amara, Onno Faber, and Tracy Dixon-Salazar and her daughter Savannah. Their journeys may be different, but their fight to find cures connects them. Each story is unique, as told by the patients, hearing about the daily challenges they’ve faced since living with rare disease. What binds them together is the drive and dedication to push forward. They mobilize as a community to share insights, fundraise, and advocate for policy change or research that brings them closer to a breakthrough. The concluding message is that no rare disease patient is alone, and there’s so much more we can do to advance the science that will lead to solutions.
This short film shined a light on the patient-led efforts driving forward progress against rare disease, and explained how the Chan Zuckerberg Initiative is empowering these patients through the Rare As One Project. These individual patients and families do an incredible job at pulling the viewer in and giving a glimpse of what it’s like to have a rare disease, and why we have no time to lose in building a network that ensures patient collaboration to access research, tools, and support to press on. Viewers get a firsthand look at stories in the fight -- from going back to school to become scientists; to organizing research communities and building patient registries; and even selling cupcakes to start research centers. The film has bolstered the Rare As One Project, receiving a quarter-million views online and over 11 million impressions, and helping generate 325 articles about our work empowering rare disease patients. Our greatest hope for this film is that these stories provide encouragement as we continue to support the global community of rare disease patients and loved ones searching solutions through the Rare As One Project.
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