Huge SDS advocacy and awareness win: Osmosis video on Shwachman-Diamond Syndrome receives thousands of views, with millions more as a potential reach
As part of the SDS Alliance's efforts to raise the profile of Shwachman-Diamond Syndrome as an important disease worthy of attention by the medical and research community, we devised a plan to reach the right audience in impactful ways. As such, the next generation of doctors is a major audience to engage. Therefore, we reached out to National Organization for Rare Disorders (NORD) and Osmosis.org earlier this year to propose the creation of a video dedicated to Shwachman-diamond Syndrome. Osmosis.org has the biggest reach into the community of future doctors and caring healthcare providers though their unique approach to education with high quality and medically reviewed videos and innovative learning platform.
We are so excited and humbled to announce that an Osmosis.org has created a video on Shwachman-Diamond Syndrome, and published as part of the "Year of the Zebra" Initiative. For context, there are over 10K rare diseases, and so it is a huge deal for SDS to be featured among just a handful of zebras on this impactful platform. The video provides a comprehensive overview of SDS in just 5-minutes, in a concise, inviting, and easy to follow format.
The impact is worth celebrating. In the first month alone since publishing, the video has been viewed over 4,000 times. Which means that over 4,000 more future doctors and healthcare providers are now aware of SDS and are more likely to consider testing patients for it and/or understand what specialists to consult. And this is just the start. Osmosis.org has over 6 million subscribers and surpassed 3 million subscribers of their YouTube channel, as of last month. An faster diagnosis and better care will be of real, tangible benefit for new patients and families, as well as research and therapy development efforts moving forward.
We encourage the entire SDS community to spread the word and share the video widely and often. It's easy to do. Share
this blog post using the sharing buttons on the bottom
our page on What is SDS (with the Osmosis video embedded on top), or
the YouTube link to the SDS video
Our heartfelt THANK YOU to the Osmosis team for creating this amazing resource, and to the SDS community for their help spreading the word. It takes a village. We are turning hope into action, together.
What is the "Year of the Zebra" initiative?
2023 is the 40th anniversary of the Orphan Drug Act which gave hope to the hundreds of millions of people around the world who are directly affected by rare disorders (also known as “zebras,” because they are less common than horses). Elsevier Health is launching an ambitious initiative called “The Year of the Zebra” to educate millions of current and future healthcare professionals, caregivers, researchers, patients, family members, and the general public about these zebras.
What is Osmosis.org from Elsevier?
Osmosis.org is a leading medical & health education platform with an audience of over 6 million current & future clinicians & caregivers.
Their vision: Everyone who cares for someone will learn by Osmosis!
Their YouTube channel features general consumer health videos to educate the public about important medical concepts. The Osmosis.org learning platform features more in-depth basic and clinical sciences videos for health professionals and students, hundreds of decision making trees, thousands of board-style practice questions and flashcards, and advanced features like quiz builders, playlists, collaborative tools, mobile app, and more.
Watch this video introduction to learn more about the power of their approach.
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