The Rare Diseases Series: Year of the Zebra, Osmosis (Elsevier), and YouTube Health—Shining a Public Spotlight on Rare Diseases
Rare diseases, often referred to as orphan diseases, are a group of conditions that affect a small percentage of the population. While each rare disease may be uncommon individually, collectively, they impact millions of people worldwide. These diseases pose unique challenges for both patients and the medical community due to their rarity and complexity. In an effort to raise awareness and support for those living with rare diseases, the “Year of the Zebra” initiative has emerged as a powerful campaign that aims to shed light on the struggles and triumphs of individuals battling these conditions. Read more about the importance of medical communications in rare diseases here.
What Is the “Year of the Zebra” Initiative?
The “Year of the Zebra” initiative is a global movement that originated from the rare disease community. It is named after the zebra, an animal that stands out in a herd of horses due to its distinctive black and white stripes. The zebra has become a symbol for the rare disease community because, in the medical world, the term “zebra” is often used to describe rare diseases. Doctors are taught to think of “horses” (common conditions) when they hear hoofbeats, but sometimes, those hoofbeats belong to “zebras” (rare diseases). This notion underlines the idea that while rare diseases are uncommon, they deserve attention, diagnosis, and research just like more prevalent conditions.
The “Year of the Zebra” initiative focuses on 4 key goals:
1. Raising Awareness: The initiative aims to increase public awareness about rare diseases and the challenges faced by those affected by them. By using the zebra as a symbol, the campaign highlights the need to pay attention to the unique and often overlooked issues that rare disease patients encounter.
2. Advocating for Research: Funding for research into rare diseases is limited compared to common conditions. The initiative calls for increased research and development efforts to better understand the underlying causes of rare diseases, develop effective treatments, and ultimately find cures.
3. Supporting Patients and Families: The campaign emphasizes the importance of providing a support network for individuals and families affected by rare diseases. This includes offering emotional and practical assistance, as well as access to appropriate medical care and information.
4. Promoting Collaboration: The “Year of the Zebra” encourages collaboration among patients, healthcare providers, researchers, and policymakers to work together in finding solutions and improving the quality of life for those with rare diseases.
The Power of Community
One of the most significant strengths of the “Year of the Zebra” initiative is the sense of community it fosters among those living with rare diseases. Rare disease patients and their families often feel isolated because of the rarity of their conditions. The initiative brings together people from different parts of the world who share similar experiences, challenges, and hopes. This sense of belonging provides valuable emotional support and encourages individuals to take action on behalf of the rare disease community.
Online platforms and social media play a crucial role in connecting rare disease patients and their families. They serve as spaces for sharing stories, resources, and information. They also enable advocacy efforts to reach a broader audience and engage with healthcare professionals, researchers, and policymakers.
Advocating for Policy Changes
The “Year of the Zebra” initiative also extends its efforts to advocate for policy changes that can benefit rare disease patients. This includes measures such as:
1. Improving access to healthcare services: Ensuring that individuals with rare diseases have access to appropriate medical care and specialists.
2. Promoting research incentives: Encouraging governments and organizations to provide incentives for pharmaceutical companies to develop treatments for rare diseases, such as orphan drug designations and tax credits.
3. Establishing patient registries: Creating databases of patients with specific rare diseases to facilitate research and improve patient care.
4. Raising awareness among healthcare professionals: Educating doctors and other healthcare providers about the signs and symptoms of rare diseases to help with early diagnosis.
In a significant stride towards addressing the unique challenges faced by individuals with rare diseases, Elsevier, a prominent global leader in evidence-based clinical practice content, research publishing, and information analytics, has unveiled an ambitious global initiative known as the “Year of the Zebra.” This initiative, led by Osmosis from Elsevier, the world’s premier video education platform for healthcare professionals and caregivers, is designed to foster awareness, education, and support for the rare disease community worldwide. The announcement was made on February 28, 2023, coinciding with World Rare Disease Day.
The “Year of the Zebra” encompasses several key components, all aimed at empowering healthcare professionals, students, and the global population affected by rare diseases. The cornerstone of this initiative is the launch of the Elsevier Rare Disease Healthcare Hub, a groundbreaking online information center dedicated to rare diseases. This hub, one of the largest of its kind globally, will be unveiled alongside the introduction of Elsevier’s open-access scientific journal, “Rare. Open Research in Rare Diseases.” This international peer-reviewed journal, along with a few others, will not only focus on disseminating the latest research findings in the field but also shine a spotlight on the patient experience by featuring peer-reviewed articles authored by patients and caregivers.
Jan Herzhoff, President of Elsevier Health, pointed out the crucial need for more educational resources related to rare diseases for both clinicians and patients. He underscored the extended period it often takes, ranging from four to nine years, for an accurate diagnosis to be reached. This delay can lead to prolonged suffering and, in some cases, untimely death. Herzhoff expressed his belief that the “Year of the Zebra” initiative, combined with the new open-access journal and healthcare hub, alongside Osmosis’ highly effective educational videos, is uniquely positioned to provide meaningful content and resources for the benefit of rare disease patients and their families. By fostering collaboration with researchers and patient advocacy groups, the initiative aims to raise awareness and drive efforts toward accelerated research and more efficient diagnoses and treatment options.
To expand the reach and impact of the initiative while educating the broader public on rare diseases, Elsevier has formed multi-year partnerships with rare disease patient advocacy organizations, including the GLUT1 Deficiency Foundation and the Alpha 1 Foundation. Additionally, it has enlisted the expertise of numerous distinguished medical professionals from esteemed institutions such as the Mayo Clinic, Johns Hopkins University, and New York University. Notably, YouTube Health is a key partner joining the global “Year of the Zebra” initiative. Dr. Garth Graham, Director and Global Head of Healthcare and Public Health Partnerships at YouTube, emphasized the importance of making medical information more accessible for millions of people worldwide living with rare diseases. He highlighted the collaboration between YouTube and Osmosis from Elsevier as a means to demystify rare diseases, raise awareness, and foster community through the power of video. This YouTube channel now has 2.9 million subscribers!
To Conclude –
The “Year of the Zebra” initiative serves as a beacon of hope for the millions of individuals living with rare diseases around the world. By raising awareness, advocating for research and policy changes, and fostering a sense of community, this campaign has the potential to make a profound impact on the lives of rare disease patients and their families.
While rare diseases may be individually uncommon, they collectively affect a significant portion of the global population. Every person living with a rare disease deserves to be heard, understood, and supported. The “Year of the Zebra” initiative reminds us that, together, we can make a difference and work towards a future where rare diseases are no longer a source of suffering, but instead a cause for hope and healing.
In the next article of the Rare Disease series, we will focus on the resources available for rare disease awareness. Please contact Enago Life Sciences at services@ls.enago.com if you need specialized medical communications support for rare diseases.
Author:
Dr. Anupama Kapadia
General Manager, Enago Life Sciences
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