Thursday, February 28, 2019, is Rare Disease Day® in the U.S. The main objective of this day, which is observed the last day of February each year, is to raise awareness about rare diseases and their impact on patients’ lives.
In the United States any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are more than 7,000 rare diseases affecting 25 million to 30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children.
Because frontotemporal degeneration (FTD) disorders affect an estimated 50,000 to 60,000 Americans, it falls under the definition of a rare disease. FTD is the umbrella term for a range of disorders that impact the frontal and temporal lobes of the brain. Each disorder can be identified according to the symptoms that appear first and most prominently. The number of people diagnosed with FTD represents an estimated 10% to 20% of all dementia cases.
Besides dealing with their specific medical problems, people with any type of rare disease struggle to receive a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.
The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day® in the United States alongside its sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign. To learn what’s happening around the world, visit the global Rare Disease Day website.
The zebra is the official symbol of rare diseases in the United States. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite patients, families, caregivers and supporters.
Show Your Stripes!
The FTD Disorders Registry is proud to stand up and show our stripes on Rare Disease Day®, and we encourage you to do so as well. Below are some suggestion for how you can “show your stripes”:
- Share your story on the Rare Diseases website or on the FTD Disorders Registry Facebook page.
- Wear striped gear (clothing and/or accessories with stripes) and spread the word for others to wear stripes on February 28, 2019, in support of the rare disease community.
- Take a picture of people wearing stripes and post it on social media using the hashtags #ShowYourStripes and #RareDiseaseDay and add the hashtag for your specific diagnosis.
- Plan an event or attend an advocacy event.
- Dare your company or organization to collaborate on a major striping concept for Rare Disease Day. (For example, wrap a train car in stripes, drape your workplace’s lobby in striped banners, light up the exterior of a building with stripes.)
- Change your profile picture using the Rare Disease Day Facebook Profile Picture Frame.
- Print and use the Show Your Stripes stickers.
- Print and color in this zebra coloring sheet.
- Post messages on social media – here are some tips and sample posts.
Participate in the action! Rare Disease Day is the biggest day of the year for rare diseases. Get involved and help make an impact!