Show Your Stripes® This Rare Disease Day

By: Katherine Kim and Vera Shively 

Rare Disease Day is observed worldwide on the last day of February. Its purpose is to raise awareness for rare diseases and energize work towards equity in access to diagnoses and therapies for people living with rare health conditions. The National Organization for Rare Disorders (NORD) is the official U.S. partner for Rare Disease Day. Since the zebra has become a symbol of rare diseases, NORD invites everyone to Show Your Stripes by wearing striped clothing in support of people and families affected by rare diseases. Click here to learn more about Show Your Stripes.    

What is a rare disease? 

In the U.S. a rare disease is defined as a health condition affecting 200,000 people or less. Although any one rare disease may not affect many people, taken altogether rare diseases are not rare. Three-hundred million people worldwide live with a rare disease. One out of every ten Americans has a rare disease, and many of them are children.  More than 10,000 known rare diseases have been identified, and most of them are genetic or have a genetic component. A genetic disorder is caused by a change in a gene or group of genes which are present from birth. Seventy percent of rare genetic disorders start in childhood. Examples include cystic fibrosis and Duchenne muscular dystrophy, among many others.  

Real People and Their Stories 

In recognition of Rare Disease Day, NORD has established a special page on their website, Faces of Rare, with photos of people who have a rare disease and their stories. Viewers are invited to click on each photo to get to know a little about the person behind it. Real people have rare diseases and this is an opportunity to meet them and celebrate their special day. 

Rare Diseases and Genetics at Lurie Children’s 

The Division of Genetics, Genomics and Metabolism is a leader in rare disease diagnosis and management. Our team of providers includes doctors, advanced practice providers, nurses, nutritionists, genetic counselors and social workers. We also have a team of clinical research coordinators who enroll eligible patients into clinical trials and guide them through the process. Clinical trials are designed to develop new therapies and improve existing therapies for many rare diseases. 

Lurie Children's Hospital is the first in Illinois to receive designation as a NORD Rare Disease Center of Excellence, a network of 40 academic medical centers dedicated to diagnosing, treating, and researching all rare diseases. The network led by NORD is designed to foster knowledge sharing between rare disease experts across the country to help meet the needs of more than 30 million Americans living with a rare disease. In addition, Lurie Children’s is a site in The National Institutes of Health’s (NIH) Undiagnosed Diseases Network (UDN). Nationwide, almost 2400 participants have been evaluated through UDN and 29% of them have received a diagnosis. 

NORD’s motto is “Alone we are rare. Together we are strong®”. Rare Disease Day reminds us to join one another in support of the many whose lives are affected by a rare disease.  

Additional Resources 

• National Organization for Rare Disorders (NORD)   
• Rare Disease Day 
• Rare Disease Day 2025 NORD 
• National Institutes of Health (NIH) - Genetic and Rare Diseases (GARD)

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