by Claire Blake and Annika Paulsen – UNMC Genetic Counseling Class of 2026
What is Rare Disease Day?
Rare Disease Day takes place on the last day of February, falling on February 28th this year but 29th in a leap year. The 29th of February only happens every 4 years and is the rarest day on the calendar. The primary goal is to increase the awareness of rare disease among law- and other decision-makers as well as the general public. Increased awareness can improve access to diagnosis, treatment, and opportunities for those affected by rare diseases.
What is a rare disease?
A rare disease is one in which fewer than 1 in 2,000 people have the diagnosis. Rare diseases may be missed because common symptoms may overlap with those of a rare disease. This can make it difficult to diagnose and may delay access to necessary care, a journey called a diagnostic odyssey. The average length of a diagnostic odyssey is ~5 years. This highlights the need for continued research and support for individuals and families with rare diseases.
History of Rare Disease Day
The first Rare Disease Day was celebrated in 2008 with 18 countries participating. North American patient organizations joined the celebration in 2009. There are now thousands of events that occur on every continent in the month of February. Since its inaugural event in 2008, there have been events in more than 100 countries.
See past rare disease day celebrations
Why genetic counseling is important
About 70% of rare diseases are due to genetic causes. Genetic counselors can help identify or provide answers to many individuals with an undiagnosed rare disease. In addition to other members of the healthcare team, genetic counselors discuss family history, coordinate and facilitate genetic testing, and provide emotional support. They also educate about a diagnosis, communicate risk assessment, and review medical management recommendations, among other roles.
If you or someone you know could benefit from genetic counseling, talk to your healthcare provider or Find a Genetic Counselor.
Ways to get involved on Rare Disease Day:
- Wear Stripes: Many doctors in medical school are told, “When you hear hoofbeats, think horses, not zebras.” This is their reminder to first look for the common, and perhaps more likely, diagnosis rather than uncommon diagnoses. However, for those living with a rare disease, it is important that rare diseases are not overlooked. The stripes of the zebra serve as a symbol to remind us to “think zebras.”
- Share: Share this message on social media to spread the word about Rare Disease Day and find sharable social media graphics.
Did you know that there are 25-30 million Americans who are impacted by rare diseases? A rare disease is one that affects fewer than 200,000 individuals in the United States. There are currently over 7,000 identified rare diseases. On #RareDiseaseDay, we come together to show our stripes and raise awareness! Join us! Learn more at rarediseaseday.us #ShowYourStripes
- Advocate: Join the Rare Action Network to be a part of a network of rare disease advocates, increase awareness of the challenges of rare disease at the state and regional level, and address issues of access and coverage of treatments.
- Donate: Donate to Rare Disease Day or to the National Organization for Rare Disorders.
References
Admin, G. (2025, June 2). What is the “Diagnostic Odyssey” And how do we end it? GeneDx®.
Home. (n.d.). Retrieved February 12, 2026
Homepage. (n.d.). Rare Disease Day 2026. Retrieved February 12, 2026.
Join the Rare Action Network® | Advocacy for Rare Diseases. (n.d.). Retrieved February 12, 2026.
National Organization for Rare Disorders | NORD. (2022, March 8).