Announcing Year of the Zebra in 2023: Educating millions about rare disorders

In medical school, we’re taught “When you hear hoofbeats, think of horses, not zebras.” Put another way, think of the most common condition, not the rare one.

The advice is meant to avoid over-testing, though it didn’t sit well with our founder for two reasons. First, it was dismissive of hundreds of millions of patients and their families who suffer from these rare diseases and have not had access to an equitable and inclusive healthcare system.

Second, he was born in Sub-Saharan Africa, where zebras are far more common than in the US where the phrase was coined. So what exactly is a “zebra” in the context of medicine?

It’s a rare disorder, which is defined as affecting fewer than 200,000 people in the US or less than 1 in 2,000 people in Europe.

However there are over 7,000 “zebra” disorders with new ones being discovered all the time, and they collectively affect more than 300 million people around the world, half of whom are children.

These conditions range from Adrenoleukodystrophy to Zellweger Spectrum Disorders, and given how little we know and teach about them it can take 4-9 years for patients to receive the correct diagnosis, during which time their condition can deteriorate.

Zebras matter for a few very important reasons. First and foremost, as per our core pillars at Elsevier Health, if we truly want to build an inclusive and equitable healthcare system we need to take care of our entire society, including patients who for centuries were dismissed by the medical establishment as anomalies.

As Mahatma Gandhi once said, “The true measure of any society can be found in how it treats its most vulnerable members.” Second, these patients and their families are incredibly tenacious, dedicated, and resourceful, and serve as models for highly engaged patients.

For example, Dr. David Fajgenbaum helped find an effective drug for his own battle with Castleman Disease, and John Crowley led the development of a therapy for Pompe Disease after two of his children developed the condition.

Third, research on rare disorders has advanced science and led to the discovery of treatments that have saved millions of lives.

For example, research on the rare disorder familial hypercholesterolemia helped pave the way for the development of statins that are now used by more than 200 million people for their cardiovascular health.

Similarly, tocilizumab is a drug developed for the rare disorder Castleman Disease that has been used to treat many patients with severe COVID-19.

On this point, 2023 is the 40th Anniversary of the Orphan Drug Act (ODA), which helped catalyze the development of hundreds of treatments and therapies for rare disorders, over half of which were approved in the last decade.

Given how important rare diseases are, we, from Elsevier Health and Osmosis are excited to name 2023 “The Year of the Zebra” and launch an ambitious effort to educate millions of patients, family members, healthcare professionals, researchers, students, and the general public about these zebras.

The Year of the Zebra will raise significant global awareness of rare diseases, which will: help patients and their family members understand their diagnoses and find both healthcare and hope; train current and future healthcare workers to spot these zebras earlier to reduce the diagnostic odyssey that rare disease patients go through; inspire researchers and healthcare professionals to dedicate their careers to finding cures and providing care to the rare disease community; and motivate the general public to get involved by donating time, money, or other resources to specific rare disease groups, or the community as a whole.

During The Year of the Zebra, we’ll highlight one rare disorder each week and up to one each day, similar to the “word of the day” emails you might be familiar with.

The Zebra of the Day will have engaging content. We’ll include includes a popular Osmosis-style video overview of the condition, and where possible we’ll add a real patient story that brings it to life, and a link to the patient advocacy group where you can learn more and get involved.

Given Osmosis' reach, including 300 million views and 2.5 million registered learners, as well as strong partnerships with organizations like Coverys, Youtube, and The Merck Manuals, these Zebra features will reach millions of people and generate tens of millions of impressions in the first year alone.

How can we be confident of the impact the Year of the Zebra will have? We’re building upon our successful multi-year partnership with rare disease patient advocacy groups like the GLUT1 Deficiency Foundation, and the Alpha 1 Foundation as well as dozens of world-class medical experts at organizations like NYU, Johns Hopkins, and the Mayo Clinic.

To date the 196 rare disease videos we’ve created have already been viewed more than 35 million times and generated more than 352 million impressions, as well as comments such as these:"This is very useful information.

My youngest sibling has this. I didn't understand how painful it is.

Thanks for the explanation. Now I understand the irregular shape of the red blood cells.""Very good explanation.

This video helped me understand more about my new patient with OMS.""Ok, how did this 7 minute video teach me more about beta thalassemia than 2 years of grad school?!

Fantastic explanation, thank you so much!""Yes, please pass this on! I suffer from Gaucher Type 1.

It's very uncommon, and many doctors don't diagnose it because of how rare it is...Please, future doctors, have this in your mind!"There are a few ways you can get involved with The Year of the Zebra.A limited number of organizations can “Adopt” one or more Zebras (a group of Zebras is actually called a Dazzle!).

In addition to supporting a great cause, each organization that adopts a zebra will be featured on the newsletter, website, YouTube release, and other distribution channels that reach millions of current and future healthcare providers, researchers, students, patients, family members, and the general public.

To learn more please email us at [email protected]’re also launching a grassroot fundraising campaign so we can produce and distribute as much rare disease content as possible.

No amount is too small or big! Finally, you can spread the word by sharing this video, the website, and our newsletter with anyone in your network, whether it’s your company, university, family, or group of friends and colleagues.

Thank you for your interest and engagement in helping us achieve a more inclusive and equitable healthcare system for the hundreds of millions of rare disease patients and their loved ones!

To learn more, visit www.osmosis.org/zebra millions of rare disease patients and their loved ones to learn more Visit www dot osmosis dot org