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The Year of the Zebra

What is this 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. We are inviting an exclusive group of organizations and individuals to “adopt” one or more zebras by contributing to the development and distribution of highly engaging and impactful educational content about those rare disorders that will collectively reach millions of people around the world. 

Adopt a Zebra

We are inviting an exclusive group of organizations and individuals to "adopt" one or more zebras by contributing to the development and distribution of highly engaging and impactful educational content about those rare disorders that will collectively reach millions of people around the world.

Email [email protected]

Rare Disease Day

Tuesday, February 28th is Rare Disease Day, when the world comes together to show support for the 400+ million people inflicted by 7,000+ rare diseases globally and those who care for them! It is also the day that Osmosis from Elsevier launches our global Year of the Zebraeducation initiative to drive more awareness of and support for rare diseases in the healthcare community. 

The first Rare Disease Day was celebrated on February 29th, 2008 - the rarest day given that it only occurs every Leap Year. Since then, Rare Disease Day has been celebrated on the last day of February. This year it falls on Tuesday, February 28th.

Importantly, that first Rare Disease Day back in 2008 marked the 25th anniversary of the Orphan Drug Act, which revolutionized the way treatments and cures are developed for rare diseases. Today, fifteen years later, the Year of the Zebra is a renewed commitment to achieving an inclusive healthcare system, to educating as many people as possible, and to leveraging Osmosis’ far-reaching network of followers and subscribers to ultimately drive research, action, and improve patient outcomes.

Moving forward, each week, we will continue to feature one new video highlighting a rare disease or “zebra”. That video will also be featured on the new Elsevier Rare Diseases Healthcare Hub, a global hub, available to all, that will feature the very latest research affecting patients and featuring the latest research, developments, and education materials for the rare disease community. The Year of the Zebra initiative will also see the launch of Elsevier’s new journal dedicated to the topic – Rare. Open Research in Rare Diseases.

Please help us spread the word about this worthy and important initiative in the year ahead.

The Zebra of the Week is: Nail-Patella Syndrome

Just as coin flip has a 50% chance of falling on heads, so too is the chance of transmission of Nail-Patella Syndrome from parent to child. 

As the name implies, its hallmark signs are improper development of the nails, especially on thumbs, as well as malformed or missing kneecaps (patellae). The kneecap issue, along with commonly present issues with the elbows, can limit the range of motion of the limbs and make it harder to perform tasks and activities. 

Nail-Patella Syndrome is a genetic disorder that affects approximately one in 50 thousand people and typically runs in families with 90% of people with this Zebra having an affected parent. When suspected, genetic testing for LMX1B mutations confirms the diagnosis. Treatment is directed towards specific symptoms but usually requires coordination between a team of different specialists. Watch the dedicated Osmosis video here for more.

Meet Ava

Ava’s mother held her through the first night after her late-night birth, relieved that all had gone well. The next morning, Ava’s first physical exam revealed she could not extend her arms. This was the beginning of their odyssey with Nail-Patella Syndrome. Ava has since hit milestone after milestone, even winning a basketball free throw contest without being able to extend her arms. 

Through SheLift, an organization that empowers women with physical differences to discover confidence and self-esteem, Ava has been buddied up with Natalie. Now, they each have someone to share their story and struggles with. Watch their inspirational experiences here.

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Fill out the form below to sign up for the Year of the Zebra weekly newsletter to learn about a new rare disease every week.

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Sign Up for the Year of the Zebra Weekly Newsletter

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Sign Up for the Year of the Zebra Newsletter

Fill out the form below to sign up for the Year of the Zebra weekly newsletter to learn about a new rare disease every week.

Successful submission!

Thank you for signing up for the Year of the Zebra weekly newsletter! By signing up you are helping us to achieve our ambitious goal of educating millions about rare diseases to help accelerate the diagnosis and treatment.

Printable Year of the Zebra Coloring Sheets!