Information analytics company Elsevier launched a global effort to spread awareness of rare diseases, announced on World Rare Disease Day last Tuesday.
The initiative, dubbed "Year of the Zebra," comes from Elsevier’s Osmosis, a video education platform with more than 3 million registered learners, partnering with YouTube Health. Together, they will highlight one educational “zebra,” or rare disease, each week of 2023 in video format. The platform will also grant continuing education credits to incentivize engagement with the content, a spokesperson told Fierce Healthcare. The videos will be transcribed, and video captions will be translated into Spanish and other languages.
"For millions of people around the world living with a rare disease, it can be difficult to access basic medical information online, let alone find a community that can offer understanding,” Garth Graham, M.D., director and global head of healthcare and public health partnerships at YouTube, said in a press release. The partnership is meant to demystify rare diseases, promote awareness and create community through the power of video, he added.
Rare diseases are often referred to as zebras by medical professionals due to their rarity. There are more than 7,000 rare disorders affecting hundreds of millions of individuals around the world.
Medical students are often taught “when you hear hoof beats, think of horses, not zebras,” meaning think of common conditions, not rare disorders, according to Shiv Gaglani, co-founder of Osmosis from Elsevier. “That mentality has contributed to the lengthy diagnostic odyssey that rare disease patients go through to receive the appropriate care,” he said in a press release about the initiative.
The Year of the Zebra effort includes the Elsevier Rare Disease Healthcare Hub, a new online info center dedicated to resources for people with rare diseases, and the launch of a new scientific journal, Rare: Open Research in Rare Diseases. The campaign builds on a multiyear effort by Osmosis from Elsevier to put out nearly 200 videos on rare diseases viewed more than 35 million times.
Elsevier partners with more than 200 medical, nursing and other health professional programs. Based on these partnerships, subscriptions and YouTube subscribers, the campaign is expected to reach more than 5.7 million people, the spokesperson said. YouTube's format helps make complex information more digestible to a wide variety of learners, Gaglani argues.
“Due in part to a lack of educational resources on rare diseases for clinicians and patients, it takes four to nine years on average for an accurate diagnosis to be made, during which time disease progression can lead to prolonged suffering and untimely death,” Jan Herzhoff, president of Elsevier Health, said in the announcement. “By working collaboratively with researchers and the patient advocacy community, our hope is that these efforts will have an impact in creating awareness and driving action toward more research and quicker diagnoses and treatment options.”
A limited number of organizations can "adopt" a zebra—meaning sponsor the campaign. Sponsoring organizations may receive a certificate of adoption or could be featured on Elsevier distribution channels as a sponsor.