PHILADELPHIA, PA – September 30, 2019: There are 7,000 recognized rare disease conditions that affect between 25 and 30 million people in the United States alone, and the vast majority are totally unknown in the community. What if there was a film to bring each of these diseases, and the people fighting them, into the spotlight?
Signant Health, formerly CRF Health and Bracket, is proud to sponsor Disorder: The Rare Disease Film Festival (RDFF), a visionary event showcasing films from around the world that uncover the challenges of families living with a rare disease. Taking place in San Francisco on November 9-10, 2019, at The Mission Bay Conference Center, DISORDER: RDFF will attract audiences from the patient advocacy community as well as the biopharmaceutical research industry.
First held in 2017 in Boston, the festival has been credited with sparking conversations about patient-centered care, research, and drug development. From grassroots passion projects to movies from Academy Award-nominated film makers and mainstream television personalities, DISORDER: RDFF will include a range of documentaries, animations and fictional stories centered on the realities and devastating impact of rare diseases that lack the same visibility as more prolific conditions.
DISORDER: RDFF was founded by Daniel DeFabio and Bo Bigelow, who met at a patient advocacy conference where they discovered they had each made films about their own child’s rare disorder. Disappointed with the lack of opportunities to showcase their awareness-raising projects, they set about establishing DISORDER: RDFF. It quickly became a resounding success and spawned screenings of festival films in multiple U.S. cities over the past few years. The increasing demand for more stories inspired them to host another festival this year in San Francisco, with plans to make DISORDER: RDFF an annual event.
“Living with a rare disease can literally make you one in a million, and it can certainly feel like that sometimes,” explains Daniel. “However, together we are a population of around 30 million people. Together, we can diminish isolation and make a difference. These films put the often abstract and dire clinical information into the context of real people living their lives. We believe increased awareness can connect patient families, inspire conversations about translation applications of current science, lead to new paths for research and save lives. It all comes back to that well-known slogan: ‘alone we are rare, together we are powerful.’”
One of Bo and Daniel’s goals is to foster new collaborations that can support the community by bringing people affected by rare disease together. This includes patients, caregivers, advocates, researchers and anyone whose life is impacted by a rare disease.
“When you hear a term like ‘rare disease’ it feels so abstract, so far away,” said Kristopher Sarajian, Vice President of Marketing at Signant Health. “Film has a unique power to close that gap and connect audiences with the real people and the real families behind the statistics in order to share their stories, convey empathy, raise awareness, and ultimately drive action. It’s only by understanding these stories that the research community can design and develop treatments and interventions that tackle unmet need and provide crucial and meaningful outcomes. With DISORDER: RDFF, Daniel and Bo have created what will become a lasting legacy – and Signant Health is honored to play a small part in sponsoring their mission to spark honest conversations about the personal stories that matter most.”
DeFabio concludes: “All credit to the people who dedicate their lives to researching a drug, but they are often the first to admit that sometimes they get lost in the lab and forget the human being they are working for. When you see a short eight- or 15-minute film showing the impact these conditions have on somebody’s life, it’s different. It’s a reminder of why they do what they do every day. We want people to broaden their view. Of course, we are all dedicated to a single disease because it either affects us personally, or that’s where our advocacy or research interests are. But, when we come together like this and learn each other’s stories, when we see that they are similar to ours while at the same time being unique, that can open up new opportunities.”
To learn more about how Signant Health helps biopharmaceutical companies solving rare disease challenges by providing the most comprehensive patient-technology suite for eCOA, eConsent, Patient Engagement, IRT, Clinical Supply Management, and Endpoint Quality solutions, visit www.signanthealth.com.
For more information on DISORDER: RDFF, including ticket information and a full list of films to be screened, go to www.rarediseasefilmfestival.com.
Who Is Signant Health?
The best technology succeeds in the background. Signant Health (formerly CRF Health and Bracket) provides solutions that simplify every step of the patient journey to make it easier for people to participate in, and for sites and study teams to run, clinical trials. Signant unites eCOA, eConsent, Patient Engagement, IRT, Clinical Supplies and Endpoint Quality into the industry’s most comprehensive patient-centric suite – an evolution built on more than 20 years of proven clinical research technology. Our intense focus on the patient experience, deep therapeutic area expertise and global operational scale enable hundreds of sponsors and CROs (including all Top 20 pharma) to extend the reach of drug development, expand patient opportunities and improve data quality – helping them bring life-changing therapies to our families and communities around the world. Take a significant step toward patient-centricity at signanthealth.com.
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