Rare Disease Day falls this year on February 29, an invitation to leap into awareness about rare conditions that impact more than 300 million lives worldwide.
Amid approximately 7,000 known rare diseases – most of which lack approved treatments – advocates use Rare Disease Day as a platform to share stories, educate the public and advocate for solutions. Supporters frequently call for more research and swifter diagnoses. It’s common for some rare disease patients to endure symptoms for years before getting an accurate diagnosis.
Whether you’re a seasoned advocate or new to the cause, it’s not too soon to plan how you will participate in Rare Disease Day 2024. Here’s a guide for how to get involved:
Light up a landmark or your own home – and share Rare Disease Day 2024 photos: Every year, the “Global Chain of Lights” illuminates the nighttime skies on Rare Disease Day. From Japan’s Tokyo Tower to Philadelphia’s Boathouse Row to the spires of St. Elizabeth Church in Germany – all these landmarks have sparkled with lights in the Rare Disease colors of blue, pink, purple and green. The lights shine to send a message of global solidarity, organizers say.
See last year’s light displays supported by CSL in Philadelphia and Marburg, Germany.
Rare Disease Day organizers offer advice for how to light up a landmark in your city – or you can just light up your own home. Promoting a recurring theme of “Share Your Colors,” organizers urge supporters to use their creativity and put their own stamp on the celebration.
They also encourage patients, advocates and other supporters to use social media to share light-up displays and Rare Disease Day messages. Find social media shareables here.
Attend Rare Disease Day 2024 events in person and online – or organize your own: In the United States, the public can attend a free, day-long event at the National Institutes of Health (NIH). Held annually since 2011, Rare Disease Day at NIH features exhibitions, panel discussions, artwork, and educational posters. Participants can attend in person in Maryland or virtually but you must register in advance. Learn how to register for NIH's annual event.
"There are so many ideas out there, so be creative and find what works best for you and the community that's around you," Manager of Events of Donor Engagement for NORD Jamie Pacheco said.
In Europe, nonprofit advocacy group Eurordis sponsors the Black Pearl awards to recognize standout advocates in the rare disease community. CSL Vifor, a business unit of CSL specializing in iron deficiency and nephrology, is among the sponsors of this year’s Black Pearl Awards in Brussels. The in-person event can be viewed virtually as well.
Also in Europe, the Swiss Center for Translational Medicine (sitem-insel) in Bern, Switzerland, will host a Rare Disease Day forum that will be open to the public. CSL, which has a large presence in Bern, collaborates with the research facility and the CSL Biologics Research Center is located there.
Search by location on the Rare Disease Day website to find other events near you. Rare Disease Day organizers also encourage patients and their advocates to create their own educational events or fundraisers.
Share your patient story or listen to someone else’s: The “Share Your Colors” theme for Rare Disease day encourages increased awareness of the challenges of living with a rare condition. With thousands of rare diseases, everyone’s story will be their own.
“When we talk about show your colors, it’s really talking about show why Rare Disease Day matters to you, what is your story,” said Lisa Sarfaty, Vice President of Community Engagement for the National Organization for Rare Disorders.
Find patient stories on CSL.com and on RareDiseaseDay.org.
Don’t forget to show your zebra stripes: The rare disease community adopted the zebra as its icon because of an old rule of thumb for doctors that doesn’t apply to rare disease patients. The saying goes “when you hear hoofbeats think horses, not zebras,” an argument for suspecting the most common causes, not the rarest. But some illnesses defy the most common explanations, as rare disease patients prove every day.
Rare disease advocates often wear stripes and zebra-patterned clothing – and those zebra fashions can be a conversation starter, Rare Disease Day organizers say. See advocates wearing zebra stripes and explaining who they wear their stripes for on the Rare Disease Day website.
