“Rare in Common” Film Project Premiered on World Rare Disease Day
March 7, 2016
Cambridge BioMarketing, the world’s leading rare disease and specialty market agency, this week premiered Rare in Common, a film project to honor people facing the challenges of rare diseases. The private screening convened patients, caregivers and advocates for an evening of celebration at the Landmark Kendall Square in Cambridge, MA. Debuted on Rare Disease Day, the film focuses on the lives of inspiring people in the rare community.
“Every rare disease is different but they all have rare in common. We want this film to showcase the common traits of rare to create a unified and louder voice, strengthen the sense of community among patients, caregivers, providers and government, and give people validation and hope”
“For many of us that care for a loved one with a rare disease, we’re just looking for answers and that can be a long, tiring process that requires an immeasurable amount of endurance,” said Janis Creedon, mother and caregiver of four year-old Luke who is still in search of an official diagnosis. “Rare in Common truly captured the journey we are on. Before this film we didn’t think there was anyone who understood what we are going through, but this film and the premiere event introduced us to a network of people just like us that fight and advocate each and every day. They get it and live it just like us and that is a powerful and inspiring thing, to know we are not alone and part of something larger.”
“As a caregiver and patient advocate it can often feel like you are on ‘Lonely Island’ and you’re just waiting for someone, anyone, to throw you a bottle with hope in it,” said Ed Burton, father and caregiver of 11 year-old Bella who has been diagnosed with Morquio Syndrome. “This film does an amazing job showcasing the enthusiasm and passion of the parent advocates and families in a way that helps to break down barriers, create community and encourage one another.”
350 million people worldwide have a rare disease and 30 million of them are American. There are 7,000 rare diseases in existence today and, on average, each disease takes eight years to diagnose. People with rare diseases have amazing stories to tell but often struggle to be heard. Cambridge BioMarketing launched the film project last year to compile patient stories into a compelling narrative to share with the world.
“Every rare disease is different but they all have rare in common. We want this film to showcase the common traits of rare to create a unified and louder voice, strengthen the sense of community among patients, caregivers, providers and government, and give people validation and hope,” said Alisa Shakarian, creative director of art, Cambridge Biomarketing, and director of Rare in Common. “Patients and caregivers impacted by a rare disease demonstrate an amazing amount of unconditional love, patience and strength every minute of every day and we want the stories in the film to give people the inspiration to keep fighting and advocating to show everyone that there is hope for a better future.”
To learn more about Rare in Common, visit: www.rareincommon.com.
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