This year, Rare Disease Day falls on February 29th, the rarest day of the year. Rare Disease Day is meant to raise awareness about diseases like sarcoidosis, which affect less than 200,000 people in the US. Most people who are not affected by sarcoidosis have never heard of it, and many people who are affected by sarcoidosis have very few people to turn to who understand what they are going through. Rare Disease Day gives everyone in the rare disease community a chance to stand in the spotlight and call attention to an issue that affects a small percentage of the population in a massive way.
The National Organization for Rare Disorders (NORD) is encouraging the rare disease community to get involved on Rare Disease Day through a #ShowYourStripes campaign. The name of the campaign comes from the unofficial symbol of rare diseases in the US, a zebra. The campaign encourages people with rare diseases to embrace their uniqueness, or “stripes,” and wear it loudly and proudly. NORD put out three examples of how people can get involved on Rare Disease Day: Share your story, join the movement, and raise social awareness.
Share Your Story
Sharing your story gives people insight into what it is like to live with a rare disease. It will always be difficult for people to understand the struggles of the rare disease community, but storytelling could be the first step in raising their awareness. There are many ways you can share your story. NORD compiled a list of resources for this very purpose. Plus, FSR is always looking for patients and caregivers to share their stories on our blog. If you are interested in letting us share your story, e-mail firstname.lastname@example.org.
Join the Movement
NORD powers the Rare Action Network, which is a community that connects people in the rare disease community and gives them the resources and information they need to become advocates. Joining the Rare Action Network is a great way to #ShowYourStripes for Rare Disease Day. Additionally, Team KISS is FSR’s sarcoidosis-specific action community. People in the sarcoidosis community can raise funds and awareness through team KISS by hosting events in their hometowns. Anyone can start or donate to a Team KISS fund, contributing directly to efforts to come up with better treatments and a cure for sarcoidosis!
Raise Social Awareness
Social media is a great outlet to raise awareness about rare diseases. People can post their stories or show support on Twitter, Facebook, and Instagram using the hashtags #ShowYourStripes and #RareDiseaseDay. We can use social media to raise awareness about rare diseases and bring the rare disease community together on a national scale!
Whether you #ShowYourStripes by donating to a cause you care about, sharing your story online, or simply telling someone about Rare Disease Day, NORD and FSR appreciate your efforts towards making the world more aware of rare diseases.