What is Rare Disease Day?
Rare Disease Day is an annual global observance dedicated to raising awareness of nearly 7,000 rare diseases impacting more than 300 million people around the world.
This day gives us the opportunity to shed light on these diseases and the people affected by them. Additionally, it's a chance to raise money and awareness to support research and treatment methods.
What is a rare disease?
If fewer than 200,000 people in the United States are affected by a disease, it is classified as rare by the Orphan Drug Act.
When is Rare Disease Day 2025?
Rare Disease Day falls on the last day of February each year. In 2025, Rare Disease Day will be Friday, February 28. Consider marking the day in your calendar and showing your support for those living with rare diseases.
Our commitment to finding cures for rare diseases
At St. Jude, we’re committed to understanding and working toward cures for rare pediatric diseases. Thanks largely to donations from our dedicated supporters, scientists at St. Jude have developed a tool that can help identify the genetic reasons why some people are more prone to rare diseases, such as amyotrophic lateral sclerosis (ALS) and numerous cancers.
This can help us understand what contributes to disease development, who may be predisposed to rare diseases and potential new treatment methods for those diseases.
St. Jude patient Kinsley with her mom and dad
Read about rare disease research from St. Jude
Providing detailed information about clinical trials is one way care teams foster collaboration with patients and their families.
St. Jude researchers identified inner ear defects in the absence of ABC transporter proteins, implying a potential underappreciated role in hearing impairment.
St. Jude scientists found that a drug that inhibits two proteins improved hemophagocytic lymphohistiocytosis in models of this inflammatory syndrome.
Artwork by St. Jude patient Reid
1. Show your stripes
The zebra, with its signature black and white stripes — each with a pattern as different as a fingerprint — is the official symbol of rare diseases in the United States. This Rare Disease Day, show your support by wearing striped clothing and accessories, and spread awareness by explaining to others the meaning behind your clothing choices.
St. Jude patient Romeo
2. Learn and share about rare diseases
Education and awareness are a large part of how we celebrate Rare Disease Day. Take some time to learn about rare diseases and how they affect those who live with them, their families and caregivers. Research different diseases, read and share stories from patients and ask the people in your life with rare diseases about their experiences.
St. Jude patient Fisher and his mom
3. Support rare disease research
Research is essential to discovering new treatments and cures for rare diseases, and St. Jude is committed to furthering progress for a number of diseases. But research requires resources. Consider donating to organizations, like St. Jude, that are focused on research and maximizing the impact of discoveries.
4. Volunteer
You can also donate your time by volunteering. When you give your time to a cause like St. Jude, you're helping support our efforts toward understanding and curing rare diseases. Consider volunteering in-person or virtually, or by fundraising to help support the mission of St. Jude.
5. Participate in charity events
Hosting or attending an event can spread awareness and raise funds for organizations, like St. Jude, researching rare diseases. Consider participating in a St. Jude event or organizing a fundraiser to help our kids and their families.
St. Jude patient Nora Kay
Your support helps kids like Nora Kay
For six months in 2023, no one could figure out the cause of Nora Kay’s symptoms: a rash, an enlarged spleen and a dropping platelet count. After her spleen had to be removed, tests showed it “was just filled with lymphoma,” said her mom. At only 4 years old, Nora Kay had hepatosplenic gamma delta t-cell lymphoma, a form of cancer associated with the liver and spleen.
Nora Kay was referred to St. Jude, where she underwent chemotherapy and a bone marrow transplant. There were no matches for her in the unrelated donor registry, but fortunately, the St. Jude Bone Marrow Transplantation Program has been a pioneer in performing haploidentical (or half-matched) transplants. Nora Kay’s dad was her donor in a haploidentical transplant in January 2024.
Today, Nora Kay has completed treatment and is back at home
Why support the global impact of St. Jude research?
St. Jude is leading the way the world understands, treats and defeats childhood cancer and other life-threatening diseases.
St. Jude cares for some of the world’s sickest children regardless of their race, ethnicity, beliefs, or ability to pay. Our patients receive the customized care they need, no matter what barriers they may face.
Because of your support, we can provide children cutting-edge treatments not covered by insurance, at no cost to families. Together, we can save more lives.
St. Jude patient Beckett
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