Demystifying rare diseases with Shiv Gaglani
Feb 28, 2023 – [[read-time]] minute read
“When you hear hoofbeats, think of horses, not zebras.” That’s what Shiv Gaglani was taught in medical school — to think of the more common conditions rather than the rare ones when diagnosing.
This didn’t sit well with him. Born in Namibia in Sub-Saharan Africa, where zebras are actually pretty common, Gaglani felt it was unnecessarily dismissive of the hundreds of millions of patients worldwide who are afflicted by over 7,000 rare diseases (“zebras”) ranging from adrenoleukodystrophy to Zellweger Spectrum Disorders.
That’s why he and his colleagues at Osmosis.org from Elsevier started the Year of the Zebra, a campaign that YouTube is partnering with to help raise awareness about rare diseases and build community for patients and families through the power of video. I sat down with Gaglani to learn more.
'A burden shared is a burden halved.' An undeniable part of the patient journey is the shared experience with others. Especially in the rare disease community.”
Shiv Gaglani Co-founder & CEO of Osmosis.orgTell us, what is the Year of the Zebra and what was your inspiration behind the campaign?
Shiv Gaglani: Throughout 2023, we’re releasing at least one new video on a rare disease to our YouTube channel every week, to further educate hundreds of millions of people around the world about specific rare disorders and the community as a whole. The Year of the Zebra coincides with the 40th anniversary of the seminal Orphan Drug Act, which gave hope to rare disease patients and family members by incentivizing life science organizations to develop or repurpose therapies and cures for them.
Many of the most influential and inspirational patients I’ve met were those with rare diseases such as phenylketonuria, porphyria and cystic fibrosis, who despite significant setbacks such as a prolonged diagnostic journey and the lack of therapies or cures, continued to press on and make the most of life. That’s why in addition to the popular Osmosis-style video overview of the condition, we feature a real patient story that brings the condition to life and a link to the patient advocacy group where our audience can learn more and get involved.
We created a video overview that describes the Year of the Zebra in even more detail that you can watch here:
Tell me a little bit about what you hear from people who live with rare conditions – what is their experience trying to get a diagnosis, and trying to find more information about their disease?
Elevating these stories and generating broader interest in rare disease research ... can often lead to therapies for more common conditions. ”
Shiv Gaglani Co-founder & CEO of Osmosis.orgShiv Gaglani: Patients and family members often face shared challenges starting with lengthy diagnostic journeys given how little healthcare professionals are taught about these rare disorders and how tools such as comprehensive newborn genetic screening are not yet ubiquitous. Once the patients receive a diagnosis they often feel like they’re in the wilderness, trying to watch any video or read any journal article that can give them more information and ultimately hope that they can treat or cure the disease. Many of these patients and family members join their respective patient advocacy organizations to raise awareness and money for the treatment and research, with some inspirational stories such as that of father John Crowley who helped find a treatment for Pompe Disease, which affects two of his children who have survived decades longer than their prognosis when initially diagnosed.
We’d like to continue elevating these stories and generating broader interest in rare disease research, especially because the research can often lead to therapies for more common conditions. For example, research on the rare disease familial hypercholesterolemia directly led to the development of statins which are used by hundreds of millions of people worldwide for their heart health.
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Something we have seen at YouTube is that people come to our platform looking for help with how to live with a condition – very human questions about how others have experienced the same thing. How is that further complicated for people who have a rare condition and may not be able to access a community as easily? How can online video help ease the loneliness of living with a rare disease?
Shiv Gaglani: “A burden shared is a burden halved.” An undeniable part of the patient journey is the shared experience with others. Especially in the rare disease community, coming together transcends origin and differences. Patient groups have been doing a tremendous job to provide support and connection with regards to each individual disease, but there is still much to do to reach a truly inclusive healthcare journey for all.
In this context, we have made sure to highlight the relevant story of a patient in every Year of the Zebra Newsletter (sign up here), usually in the form of an online video available on YouTube. This is a clear signal to all patients that they are not alone and that we’re able to create connections in ways that were previously impossible. The comments on these patient story videos as well as the Osmosis videos on rare disorders are heartwarming and show patients and their family members that they are not alone.
As we grew our YouTube channel to over 2.7 million subscribers, we kept a strong interest in advocating for rare disease patients and their family members by creating one of the largest video content libraries on rare diseases. To date we’ve made over 200 videos that have been seen over 35 million times, but we have a long way to go to cover the 7,000+ rare diseases that exist. We’ve already been asked to turn The Year of the Zebra into The Decade of the Zebra and continue developing and distributing content related to rare diseases.
We hope that with the right partnerships we’ll be able to achieve this! Many of these were created in collaboration with patient advocacy groups such as the GLUT1 Deficiency Foundation and the National Organization for Rare Disorders, among many others.
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How do you think that video and digital have changed or influenced awareness and community organizing around rare disorders?
Shiv Gaglani: Nearly 5 billion people around the world have access to the Internet now, which means that even when patients have a one-in-a-million condition like HyperIgM syndrome, they are able to connect with 5,000 others who may have that. YouTube’s video format and platform has made complex and often scary information more digestible to a wide variety of learners, from a practicing physician with decades of experience to a middle school student who has cleidocranial dysplasia to a parent of a child just diagnosed with Friedrich’s ataxia.
Furthermore, the ability to translate and localize this content - capabilities that are only getting better each month - means that the same content and community will find a broader audience in the near future. The larger the community, the more advocacy, awareness, and power the clinical trials will have so I’m very optimistic that the next decade starting with The Year of the Zebra will see many more treatments and cures for rare disease patients.
Shiv Gaglani is the co-founder & CEO of Osmosis.org, a YouTube Health partner and popular education platform that has an audience of millions of current and future healthcare professionals, patients, family members, and others. He also spearheaded the launch of The Year of the Zebra, an ambitious initiative by Elsevier Health and Osmosis to raise massive awareness of the 7,000+ rare diseases (“zebras”) affecting more than 300 million patients worldwide.