Feb. 28, 2025, is Rare Disease Day, an international day of awareness for individuals living with rare diseases. Rare Disease Day offers many opportunities for people to connect, share their stories and advocate for improved rare disease care.
What is a rare disease?
In the United States, a rare disease is formally defined as any condition that affects fewer than 200,000 individuals. Over 7,000 rare diseases have been identified to date, impacting up to 30 million Americans. Approximately half of these individuals are children.
Notably, 95% of rare diseases currently have no approved treatments due to a combination of the high cost of drug development, limited patient populations, and a lack of data on many rare diseases.
While each rare disease impacts relatively few individuals, it is important to note that rare diseases overall are not uncommon: About 300 million people worldwide are living with a rare disease. Due to the high rates of misdiagnosis, this number is likely an underestimate of the true number of people impacted by rare disease.
The growth of Rare Disease Day
The first Rare Disease Day was organized by the European Organisation for Rare Diseases in partnership with dozens of patient organizations and took place on Feb. 29, 2008. The day is now observed each year on the last day in February, placing the day on Feb. 29 in leap years, the rarest day of the year.
On the first Rare Disease Day, 18 countries participated, most of which were located in Europe. In 2024, more than 75 countries participated, with over 670 registered events worldwide. Furthermore, the campaign was mentioned on social media over 31,000 times, with an estimated 69 million individuals reached.
Typically, the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH) hold a joint advocacy event on this day. However, the federal government recently announced that it will postpone the Rare Disease Day 2025 event this year. It plans to reschedule the event at a later date.
Why is Rare Disease Day important?
Rare Disease Day is a day of global visibility for the rare disease community. By raising awareness about rare diseases among policymakers, health care professionals and the general public, Rare Disease Day not only helps improve diagnosis and treatment, but also promotes education and reduces stigma.
The campaign also helps patients and caregivers connect to share their experiences and offer assistance to one another, helping to further build a sense of empowerment.
Rare Disease Day offers several opportunities for global collaboration between patients and researchers alike, advancing technologies and building a network for scientists and families to address the challenges of a rare disease diagnosis.
This day is also an important time to highlight health inequities and barriers in access to care for individuals living with rare diseases. Efforts to reduce disparities in rare disease care will ensure that all groups equally benefit from any and all progress in the rare disease space.
How to get involved in Rare Disease Day
There are several ways to become involved in Rare Disease Day 2025.
The Rare Disease Day website has a map of events that will be taking place across six continents throughout the week. Events include concerts, webinars, fundraisers and more.
Those unable to attend in-person events can still participate virtually. Individuals can share their stories, show their support for Rare Disease Day on social media or contact their lawmakers to advocate for improved rare disease legislation.
Participants in Rare Disease Day are also encouraged to join the Light up for Rare campaign by sharing photos of their homes decorated in the Rare Disease Day colors (green, pink and blue) to create a global chain of solidarity.
People are invited to donate to the Rare Disease Day campaign, which accepts donations year-round to support its mission.
Key Rare Disease Day events
Each year, the EveryLife Foundation for Rare Diseases hosts Rare Disease Week on Capitol Hill. During this three-day event, hundreds of advocates meet in Washington to participate in meetings with members of Congress and ensure that their voices are heard by legislators.
The European Organisation for Rare Diseases (the original organizer of Rare Disease Day) holds the Black Pearl Awards each year in February to celebrate the achievements of those in the rare disease community.
Through the concerted efforts of patients, families, scientists and more, Rare Disease Day 2025 aims to uplift the rare disease community and promote a more informed society.
