“February 29 only comes once every four years, making it the zebra of the calendar. ! Join us at the museum on Saturday, February 29, 2020 to explore what it means to solve the case of your own rare disease! This year, NORD is asking individuals, organizations and groups in the US to participate and show their stripes for Rare Disease Day in a variety of ways. How are you getting involved? Check out NORD’s social media toolkit for ideas. The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Watch the #ShowYourRare 2019 video to get inspired to paint your face and Show Your Rare during the month of February for Rare Disease Day 2019. Use the hashtags #ShowYourStripes and #RareDiseaseDay, add a brief explanation and challenge others to do the same. Wear striped gear (clothing and/or accessories with stripes) – and spread the word for others to wear stripes on Rare Disease Day. Share your story and why Rare Disease Day matters to you. Today is Rare Disease Day and it's time to Show Your Stripes! 10 Ways to Show Your Stripes! Rare in How We Care. 8.Print and color in this zebra coloring sheet – and don’t forget to share your art on social media! previous image. 3. Information on Clinical Trials and Research Studies, COVID-19 Rapid Response Leadership Series, 5 Myths About Orphan Drugs and the Orphan Drug Act. Change your profile picture using our Facebook Profile Picture Frame! Show Your Stripes for Rare Disease Day! Today, NORD launched new patient assistance programs to assist people living w/, Wear stripes on Rare Disease Day to show solidarity with the rare community, Challenge yourself and others to be as creative possible, from wearing head-to-toe stripes or zebra face paint to striping a lobby with banners or lighting up the exterior of a building with stripes, Share photos, stories and videos of you and your network showing your stripes together on social media using the hashtags #ShowYourStripes and #RareDiseaseDay. Information on Clinical Trials and Research Studies, COVID-19 Rapid Response Leadership Series, 5 Myths About Orphan Drugs and the Orphan Drug Act. Paint your face using brightly coloured face paints Pose for a selfie or group photo One Size The National Organization for Rare Disorders (NORD) is encouraging the rare disease community to get involved on Rare Disease Day through a #ShowYourStripes campaign. Wear striped gear (clothing and/or accessories with stripes) – and spread the word for others to wear stripes on Rare Disease Day. 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. Thursday, February 28, 2019, is Rare Disease Day® in the United States. $22.99. This could be as elaborate as wrapping a car in stripes, or as simple as encouraging employees to wear stripes for the day. - Organic Short Sleeve Baby Bodysuit. 356. 3. On February 28th, we shared a pot luck lunch with a striped food theme and dressed to show off our stripes. 2. Copyright ©2020 NORD - National Organization for Rare Disorders, Inc. All rights reserved. For more information on #ShowYourStripes, to stay abreast of other #RareDiseaseDay 2020 events and initiatives, and to download a selection of materials, including a social media toolkit,  media outreach templates, infographics and printable stickers, visit rarediseaseday.us. 1. $33.49. Information found at rarediseases.org states, “The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease Day decree: Show Your Stripes! The simplest way to show your stripes is by posting a photo of yourself wearing stripes in support of the rare disease community on, or in the days surrounding, Rare Disease Day on social media. While we work every day to develop therapies to fight disease, for the month of February we challenged employees and heightened awareness by highlighting different rare diseases in weekly meetings. Show your Stripes! Post messages on social media to spread the word about Rare Disease Day and stripes – here are some tips and sample posts. “At NORD, we invite all to participate in the Show Your Stripes campaign for Rare Disease Day. We are stronger together and need everyone—those directly affected by rare diseases as well as the general public—to join us in this effort.”. It’s Rare Disease Day, time to wear your stripes to raise awareness about rare diseases and the effect they have on patients’ lives. Pitch your local media outlets about your Rare Disease Day event and/or your personal story using these templates. One in ten Americans suffers from a rare disease, a disease affecting less than 200,000 people. For those near Washington, DC on Rare Disease Day, NORD is hosting a family-friendly event at the International Spy Museum called Rare Disease Day: Mission 2020. In the United States any disease affecting fewer than 200,000 people is considered rare. 10. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder. LRLS Logo. For more information on Show Your Stripes and to stay abreast of other Rare Disease Day 2019 events and initiatives, visit www.rarediseases.org. Dare your company or organization to collaborate on a major striping concept for Rare Disease Day. This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the rallying cry, “Show Your Stripes!” February 28 - Rare Disease Day - presents an opportunity to harness the creative energy of people around the world to raise awareness about rare diseases and their impact on patients’ lives. 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. 1. Wearing stripes on Rare Disease Day is a symbol of solidarity with the rare disease community. - Kids‘ Premium Hoodie. 9. See All. 6. Show Your Stripes for Rare Disease Day! NORD is imploring the world at large to show its stripes in support of the rare disease community leading up to and on Rare Disease Day, which will be observed this year on February 29, the rarest day of all. The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States. Companies and organizations can participate by collaborating on a major striping concept … Just as the zebra’s stripes are unique in the animal kingdom, those with a rare disease are also unique, though not alone. Please note that NORD provides this information for the benefit of the rare disease community. The coloring sheets are great for young kids and the word search would be appropriate for middle grades and upper elementary. 5. Show Us Your Stripes Rare Disease Day is February 29. Take a picture and post on social media using the hashtags #ShowYourStripes and #RareDiseaseDay. Join the entire rare disease community and show us how YOU support Rare Disease Day with your best interpretation of a zebra’s black and white stripes. Rare Disease Day is marked globally every year on the last day of February, the rarest date on the calendar, to underscore the nature of rare diseases and what patients face. “February 29 only comes once every four years, making it the zebra of the calendar. 2. Today, NORD launched new patient assistance programs to assist people living w/, Print and use these Show Your Stripes stickers. Share your story and why Rare Disease Day matters to you. Living Rare, Living Stronger 2020 Virtual Zebra. “At NORD, we invite all to participate in the Show Your Stripes campaign for Rare Disease Day. Rare disease patients have taken on the latter as their mascot and often refer to their advocacy efforts as “showing their stripes.” Amy Wilstermann and Rachael Baker, the Calvin professors and researchers who started Calvin’s Rare Disease Day event in 2018, look to expand the schedule this time. TOPIC: Featured News, Get Involved, Rare Disease Day. To raise awareness around rare disease issues, NORD is promoting specific ways that individuals, organizations and groups can show their stripes in support of Rare Disease Day! Tags: Rare Disease Day, Raise Awareness, Get Involved, #RareDiseaseDay, Show Your Stripes, #ShowYourStripes. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Tags: Rare Disease Day, eurordis, Peter L. Saltonstall, Show Your Stripes, Council of National Alliances. While each of more than 7,000 rare diseases is unique, there are many commonalities that … More designs. Use #RareDiseaseDay. Showing your stripes means embracing one’s uniqueness and expressing support for the approximately 300 million people worldwide living with rare diseases. Rare Disease Day is February 29. While each of the more than 7,000 rare diseases is unique, there are many commonalities that unite our community. Tell your story! 4. Living Rare, Living Stronger 2020 Virtual Zebra. ! That number has increased each year, with thousands of events now taking place around the world. Launch a Show Your Stripes challenge and dare your community of family, friends and associates to show … Take a picture and post on social media using the hashtags #ShowYourStripes and #RareDiseaseDay. NORD is a registered 501(c)(3) charity organization. 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