How to Get Involved in This Year’s Rare Disease Day

Each year, Rare Disease Day takes place on the last day of February. This year, being a leap year, means Rare Disease Day takes place on February 29. Launched in 2008 by the European Organization for Rare Diseases (EURORDIS), Rare Disease Day raises awareness for rare diseases—diseases that affect a very small percentage of the population. In the United States, the National Organization for Rare Diseases (NORD) leads the charge as a National Alliance Member under EURORDIS. There are 30+ National Alliance Members representing 74 countries (and counting!). If you don’t live in the U.S., use the EURORDIS lookup tool to find your National Alliance Member.

You may know that more than 7,000 rare diseases affect about 300 million people worldwide—more than cancer and AIDS combined. About 72% of rare diseases are genetic, whether inherited or non-inherited, and 70% begin in childhood. The goal of Rare Disease Day is simple: educate the public and key decision-makers about the impact rare diseases have on the lives of patients and their families, with the hope of getting better access to care and treatment.

The more people who are aware of the challenges that rare diseases present, the greater the likelihood of funding for research and daily care. Collectively, even small gestures of participation add up and go a long way toward these efforts. EURODIS’s official Rare Disease Day website is packed with ideas of ways to participate and resources.

Here are some of our favorite ways to support Rare Disease Day.

1. Show your stripes

The zebra is the official symbol of Rare Disease Day. Known for their unique stripes, zebras provide an excellent analogy for rare diseases, in that no two sets of stripes (or children with rare diseases) are exactly alike.

Wear stripes at home | Difficulty: Easy

Wear any striped clothing or wear a T-shirt made by a rare disease charity you support. Get your loved ones involved, too. Take photos and share them on social media using the hashtags #RareDiseaseDay and #ShowYourStripes.

Wear stripes in public | Difficulty: Medium

Credit: NORD

Head out of the house wearing stripes, even if it’s just to grab a coffee. If you’re working, see if your colleagues want to get involved. They can do something simple, such as wearing striped socks. Don’t forget to take photos and share on social media.  

If you want to involve your kids, see if their teacher and classmates want to dress up. Wearing stripes can be a lot of fun, akin to pajama day. And it’s an easy way to build camaraderie and community awareness. Another way to celebrate Rare Disease Day at your child’s school is with a stripe-themed art project. Here are some more fun ideas for raising awareness at school from NORD.

2. Light up for Rare Disease Day

Rare Disease Day is also celebrated with the Global Chain of Lights. This program encourages everyone to light up and/or decorate their home with rare disease colors at 7 p.m. local time on February 29. The official colors of Rare Disease Day are pink, green, blue, and purple, but any assortment will do. Here are two ways to illuminate your day:

Light up your home | Difficulty: Easy

Rare Disease Day - Light up for Rare
Credit: NORD

You can make this as easy or as complicated as you like. You can place a few candles in your window or illuminate the walkway leading to your front door. You can plug in a string of holiday lights by a window or put glowsticks on your bike. To make a bigger statement, light up the outside of your home. Whatever you choose, make sure to take pictures and share them.

Light up a local landmark | Difficulty: Hard

Image of The Empire State Building in New York, lit up at night in blue, pink and green, in honor of Rare Disease Day

Each year, buildings around the world are lit up in beautiful colors to support Rare Disease Day. In previous years, participating buildings have included New York’s Empire State Building, Paris’s Eiffel Tower, and Rome’s Colosseum.

If you have a local landmark in mind, you can reach out to discuss having it lit up for Rare Disease Day. This guide makes the process easier.

If you live in the United States, you can fill out a form to work with NORD on this—they will ensure the building you’re thinking of isn’t already in the works. They also offer a nice template for anyone worldwide to use when sending a request.

3. Show your support online and in social media

Whether you’re on social media or have a blog or website, there are many ways to promote education and awareness of Rare Disease Day online.

Share posts | Difficulty: Easy

You don’t need to have millions of followers or be a celebrity influencer to make a difference. If you prefer not to create posts of yourself wearing stripes or advocacy gear, you can share an educational or support post instead. For posts, you can download shareable infographics and a video available in 60 different languages from the Rare Disease Day site.

Add stripes to your social media or website | Difficulty: Medium-Hard

Adding stripes to your online presence presents an opportunity to build awareness. Free downloads, such as filters and social media frames, make it easier to do. Whether updating your social profile or adding banners to your website, each change has a collective impact.

4. Attend an event

To help spread awareness and build community, patient advocacy organizations, hospitals, and support groups host in-person and online events for Rare Disease Day. This event finder makes it easy to find out if there’s an event in your area.

Attend an online event | Difficulty: Easy

Online events offer ways to build community for Rare Disease Day. Here are some worth checking out:

  • February 23: The National Organization for Rare Disorders (NORD) is hosting a Rare Disease Day Policy & Advocacy Town Hall to discuss NORD’s state-by-state rankings on rare disease policies, proposals expected, and how you can get involved in advocacy (1 p.m. EST).
  • February 23: NORD and its Rare Action Network are hosting a Pennsylvania Virtual Rare Disease Day to discuss the challenges rare disease patients face and how to make a difference in Pennsylvania (1 p.m. EST).
  • February 27: Jerry Vockley, MD, PhD, will discuss A New Era In Therapies for Rare Diseases in this webinar sponsored by UPMC Children’s Hospital of Pittsburgh.
  • February 29: Weill Cornell Medicine and New York Presbyterian/Columbia University Irving Medical Center are teaming up to host a virtual Rare Disease Day Patient and Family Journey event featuring a number of speakers, including Megan Nolan, founder of Rare Parenting, and Ed Neilan, Chief Medical Officer at NORD, amongst others. And, bonus, the day will begin with a free screening of the film, “The Life You’re Given,” followed by a Q&A with the filmmakers (11 a.m. – 3 p.m. EST)
  • February 29-March 1: Hosted by the Alabama Rare Disease Advisory Council, the 11th Annual Rare Disease Symposium is both an online event and an in-person meeting in Birmingham, Alabama.
  • February 29: The GBS|CIDP Foundation International is sponsoring Rare Disease Day Empower Hour. This Zoom chat will focus on issues faced by the Multifocal Motor Neuropathy (MMN) community.
  • March 1: Geared towards parents, patients, and practitioners, but open to the public, the FDA is hosting a virtual public meeting to discuss their frameworks around approving research studies, clinical trials, and ultimately, treatments. They will also discuss their initiatives to advance treatments.

Attend an event in person | Difficulty: Medium-Hard

  • In Washington, D.C., EveryLife Foundation hosts Rare Disease Week on Capitol Hill every year (February 25-28). Thousands of rare disease advocates from around the country attend to get educated on policy proposals and advocate for policy changes.
  • Also in the D.C. area, you can attend the Rare Disease Day celebration at the National Institutes of Health (NIH) in Bethesda, MD. This event, which will highlight NIH-supported research, will also be streamed live and archived for replay (February 29).
  • Across Europe and the U.K., you can Run for Rare in a virtual event supported by athletes and celebrities. Last year saw nearly 3,000 people join (February 26-March 3).

Find more online or in-person events using the global event finder.

5. Share a story

Celebrating Rare Disease Day looks different for everyone. Each story has power—it can educate and inform others. Whether you tell others about your family’s experiences and challenges or share a friend’s story, you honor the difficulties families face and the need to see change in the world.

Share a story on your social media, blog, or podcast | Difficulty: Easy

You can create new content, such as a post, video, or slideshow, or you can share content already created from someone you know. If you record your own story, consider telling it in all of the languages you speak. Rare diseases are found in cultures all over the world, and a multilingual approach can increase your story’s impact.

6. Get political

The House of Representatives is known as “The People’s House,” because our legislators are meant to serve citizen interests. If you have a child with a rare disease, let your elected representatives know about the challenges you face as a rare parent.

Email your congressional representatives and senators | Difficulty: Easy

Families of children with rare diseases often struggle to afford the exorbitant costs of care. Children may also be denied access to experimental drugs that could make a big difference in their quality of life.

The Providing Realistic Opportunity To Equal and Comparable Treatment for Rare (PROTECT Rare) Act, proposed in Congress at the end of 2023, aims to address some of these challenges. But it’s a long way from becoming law. You can help speed things up by emailing your congressional representatives and senators and voicing your support. Learn more about the bill from the Haystack Project.

Write a letter to your congressional representatives and senators | Difficulty: Medium-Hard

Exercise your political muscle even further by sending your congressional representatives and senators a personal letter. For optimal results, the American Civil Liberties Union recommends keeping your letter no longer than one page and focusing one issue. In this case: increasing funding for equipment, necessary medications or dietary needs, caregiver pay, research, or another issue you face.

7. Show company support

Your organization can participate by signing up to be a Rare Disease Day friend.

Become a Rare Disease Day friend | Difficulty: Easy

Begin by filling out the online form on the Rare Disease Day site. After you submit the form, your organization’s profile will appear on the Rare Disease Day website. If you’re hosting an event, make sure to include that information as well. It will then appear in the event finder.

How will you support Rare Disease Day 2024?

Whether you wear stripes, light up your home, share your story, or contact your legislative representatives, your family’s participation can have an impact. The more people who get involved with this important cause, the easier it will be to spread awareness and increase funding for care and research.

How will you celebrate? There’s no wrong answer, but we hope you take part!

References and Further Reading

Rare Disease Day, Official Website

Rare Diseases International, Life With a Rare Disease

Nature, European Journal of Human Genetics, Wakup, S., Lambert, D., 2020, Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database

Disclosure: Occasionally, we include links to recommended products. When you purchase a product through a link, we may earn a small percentage of the sale, at no cost to you. These sales contribute to the operation of our site, and help to keep content free to read.

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