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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. 

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.

Introducing Rare: Open Access Journal

Rare is a new Gold Open Access journal that publishes international research on direct clinical and psychosocial care, diagnosis, pharmacology, public policies or ethics. Rare includes rigorously peer-reviewed articles on research that improves the well-being and quality of life of patients with rare diseases - as well as undiagnosed, unsolved disorders - and their families.

Through Rare, researchers, healthcare professionals, policy makers, and the rare disease community have a multidisciplinary open access scientific journal that covers all aspects of living with these disorders.

Editor in Chief: Prof. Dr. Wendy van Zelst-Stams, Radboud University Medical Centre in Nijmegen, The Netherlands

This week's Zebra is brought to you by

The Zebra of the Week is: Glioblastoma

Most of us live our lives according to our plans and expectations. We have small goals for the day, overarching targets for the year, expectations for the decade, and dreams for the future. What we don’t realize is how fast things can change, and how our life plans have to sometimes adapt radically to new circumstances. This is the reality of this week’s zebra, Glioblastoma.

Glioblastomas are aggressive and malignant brain tumors that originate from a type of glial cell in the brain called an astrocyte.  Usually, glioblastoma growth rate is characterized as grade IV on a scale from I to IV, indicating rapid tumor growth.

Glioblastomas can be located anywhere in the brain and do not regularly spread outside of the brain. Common symptoms include headaches, seizures, confusion, memory loss, muscle weakness, visual changes, language deficit and cognitive changes. The age group affected is usually older individuals aged 45 to 70 with rare occurrences in children. About 3 in every 100,000 people per year are affected by glioblastoma. Treatment methods typically include a combination of surgery, chemotherapy, radiation therapy and others.
 
To learn more about the diagnosis and treatment of Glioblastoma, watch the dedicated Osmosis video on YouTube and Osmosis.org

Meet Ryan Masales, police officer

Ryan’s wife Estellize describes him as the best thing she ever found. This young police officer is a father of 7-year old Ryder. He lived a life caring for other people. His life was changed with a glioblastoma diagnosis in the language center of his brain. He fought calmly and valiantly, supported by his friends and family. He even had to undergo brain surgery while awake to make sure the area where the tumor was growing were as minimally affected as possible. Watch his touching story above.

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.

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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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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.

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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!