Rare Disease Day is an annual celebration to raise awareness for rare diseases to improve the lives of individuals and families impacted by them around the world.
In the USA, a rare disease is defined as a condition affecting fewer than 200,000 people. In Europe, a rare disease is defined as a condition affecting 1 in 2,000 people. An estimated 7,000 rare diseases exist, and around 5,600 of them are genetic. Overall, 1 in 10 people are affected by rare disease, and when you add it up, that’s a staggering 400 million people worldwide.
Progress in data science and an increased understanding of disease genetics lead experts to agree that more than an estimated 10,000 rare diseases are affecting about 30 million people in the United States. Most of these people are children. In all, nearly 10% of the U.S. population have a rare disease.
Rare diseases often are difficult to diagnose — it can take years. Even after an accurate diagnosis, treatment often is not available because fewer than 500 rare diseases have FDA-approved treatments. Because of this, research led by NCATS (National Center for Advancing Translational Sciences) suggests that nationwide medical costs for individuals with rare diseases are likely as high as those faced by people with “common” diseases, such as cancer and heart failure.
The National Organization for Rare Disorders (NORD) is the official US partner for Rare Disease Day. NORD works with their sister organization EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light on rare diseases and advocates for health equity for all those living with a rare disease. For additional information and resources, visit the international Rare Disease Day site at rarediseaseday.org.
SHOW YOUR STRIPES®
The zebra has become the official symbol of rare diseases in the United States. In honor of this shared mascot supporters wear striped clothing and accessories to raise awareness of those lives impacted by a rare disease.
Wearing stripes can start a conversation that helps others learn the facts about the prevalence and challenges of rare diseases. Take a picture of your striped look and share it on social media with the hashtags #ShowYourStripes and #RareDiseaseDay and let’s make some noise for our herd.
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Photo Credit: PenWin / Shutterstock.com