Rare diseases are not as rare as you might think.
Today in 2023, there are over 6,000 rare diseases known to medicine — and that number is growing as new conditions are identified. Some of these diseases may be so rare, only a handful of people are affected. Collectively, however, around 300 million people, or 4% of the world’s population, are living with a rare disease.
Rare Disease Day aims to raise awareness and generate change for individuals with these little-known conditions, their families, and caregivers. It is observed on the rarest day of the year — February 29 (or February 28 in non-leap years).
In this article, we’ll share several ideas for how you can participate in Rare Disease Day this February. But first, what exactly is a rare disease?
What constitutes a rare disease can vary by country. In the United States, a rare disease is defined as a disease or condition that impacts less than 200,000 Americans. The European Union, by contrast, defines it as a condition that affects fewer than 5 in 10,000 people.
Scleroderma, Marfan syndrome, and Ehlers–Danlos syndrome are all examples of rare diseases. Unless you know someone who is affected by one of these diseases, you may have never even heard of them.
In fact, many diseases are so rare, doctors may not be familiar with them. This means individuals with rare diseases may have to wait a long time for a diagnosis. And that’s only the beginning. Because rare diseases receive little research, finding effective treatments can be difficult. Only 5% of rare diseases have even a single therapy approved by the Food and Drug Administration (FDA).
The good news is efforts like Rare Disease Day are helping raise awareness and advance research for diagnosis, treatment, and cures. Research for rare diseases may even help unlock insight into more common diseases. For example, research on a rare metabolic disorder, familial hypercholesterolemia, paved the way for the development of high cholesterol treatments which have saved millions of lives worldwide.
Recognizing Rare Disease Day is a vital way to help raise awareness, advance research, and promote equality for people who are affected by rare diseases. Here are five ideas to get you started:
The zebra is the official mascot of rare diseases. With that in mind, you are encouraged to “show your stripes” by wearing striped clothing and accessories on February 28. If you decide to participate, be sure to post a photo to social media with the hashtags #ShowYourStripes and #RareDiseaseDay.
Another easy way to support Rare Disease Day is to change your Zoom background. The international Rare Disease Day website has free downloadable backgrounds in over 40 different languages. They’re a fun way to get people talking about the facts and challenges of rare diseases.
If you or someone you know is affected by a rare disease, you might consider participating in a clinical trial. Not only does participating in a trial help advance research, it may also give you access to cutting-edge treatments that are not yet available to the public. Some trials may also need healthy volunteers to be used as a comparison. You can find a list of current clinical trials here.
On February 28, people around the world will light up their homes and businesses with Rare Disease Day colors of blue, green, pink and purple. Even landmarks like the Roman Colosseum have joined the Global Chain of Lights! Local schools and universities, stadiums, bridges, and monuments are all candidates to participate. Download this template letter to invite your city or local businesses to take part in the initiative.
Every year, the National Organization for Rare Disorders (NORD) organizes sports and fitness fundraisers to raise money for rare diseases. For instance, NORD’s Running For Rare pairs each runner with a patient, advocate, or other community partner. This partnership serves as inspiration for the runner, and also gives the partner an avenue to share their story and find support.
Not a runner? You can still participate by sponsoring a team or volunteering to help set up, pass out water, or cheer for runners on race day.
So there you have it: five ways to recognize Rare Disease Day. For more disability-related events and observances you can participate in all year, download our free Disability Events Calendar.
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