Just as the zebra’s stripes are unique in the animal kingdom, those with a rare disease are also unique, though not alone. TOPIC: Press Releases, Featured News, Advocacy, Rare Disease Day. In the United States any disease affecting fewer than 200,000 people is considered rare. For more information on Show Your Stripes and to stay abreast of other Rare Disease Day 2019 events and initiatives, visit www.rarediseases.org. Today is Rare Disease Day and it's time to Show Your Stripes! This could be as elaborate as wrapping a car in stripes, or as simple as encouraging employees to wear stripes for the day. 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. 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. 4. 3. Copyright ©2020 NORD - National Organization for Rare Disorders, Inc. All rights reserved. Please note that NORD provides this information for the benefit of the rare disease community. Use social media to bring awareness to your disease and rare disease in general. Created by EURORDIS (The European Organization for Rare Disorders) and its Council of National Alliances, the first Rare Disease Day took place in 2008 with events in 18 participating countries. Information on Clinical Trials and Research Studies, COVID-19 Rapid Response Leadership Series, 5 Myths About Orphan Drugs and the Orphan Drug Act. 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. Rare Disease Day is an annual celebration the 25-30 million Americans living with one of the over 7,000 rare or orphan diseases. 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! It’s Rare Disease Day, time to wear your stripes to raise awareness about rare diseases and the effect they have on patients’ lives. Stripe your organization’s website for Rare Disease Day. Everyone is urged to wear stripes on Rare Disease Day (Feb. 28) to show solidarity in rare disease awareness and education, and to share that message. Living Rare, Living Stronger 2020 Virtual Zebra. NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®! See All. Check out NORD’s social media toolkit for ideas. Take a picture and post on social media using the hashtags #ShowYourStripes and #RareDiseaseDay. 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. It’s simple to take part! Change your profile picture using our Facebook Profile Picture Frame! Because of leap year, this special day will be recognized Saturday on the rarest of days in the calendar — February 29, 2020. Today is Rare Disease Day 2020 Rare Disease Day is today, 29 February as it is a leap year. One Size 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. 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.”. 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 … Living Rare, Living Stronger 2020 Virtual Zebra. Feb 20, 2019 The Zebra, with its distinctive stripes, is the official symbol of Rare Diseases in the United States. Show Your Stripes for Rare Disease Day! Show your Stripes! 1. More designs. $22.99. 1. The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States. One lucky entry will win a $100 Amazon gift card for the most creative interpretation of a zebra’s stripes! Show Your Stripes NORD Rare Disease Day. Rare Disease Day #Show Your Stripes. Information on Clinical Trials and Research Studies, COVID-19 Rapid Response Leadership Series, 5 Myths About Orphan Drugs and the Orphan Drug Act. Tags: Rare Disease Day, Raise Awareness, Get Involved, #RareDiseaseDay, Show Your Stripes, #ShowYourStripes. How are you getting involved? Show Your Stripes. LRLS Logo. Tags: Rare Disease Day, eurordis, Peter L. Saltonstall, Show Your Stripes, Council of National Alliances. Share on social media using the hashtags #RareDiseaseDay and #ShowYourStripes to make an impact and raise awareness! 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 or arrange to take a photo of a large number of you and your colleagues assembled in stripes. Pitch your local media outlets about your Rare Disease Day event and/or your personal story using these templates. - Kids‘ Premium Hoodie. previous image. NORD is proud to join EURORDIS as the official US sponsor. “At NORD, we invite all to participate in the Show Your Stripes campaign for Rare Disease Day. Share your story and why Rare Disease Day matters to you. 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. Post messages on social media to spread the word about Rare Disease Day and stripes – here are some tips and sample posts. 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. Copyright ©2020 NORD - National Organization for Rare Disorders, Inc. All rights reserved. 3. NORD is a registered 501(c)(3) charity organization. Use the hashtags #ShowYourStripes and #RareDiseaseDay, add a brief explanation and challenge others to do the same. 8.Print and color in this zebra coloring sheet – and don’t forget to share your art on social media! Please note that NORD provides this information for the benefit of the rare disease community. 10. 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. Facebook Twitter Pinterest e-Mail. Why is this day important to you? 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!” The theme of this year’s Rare Diseases Day was “Show Your Stripes.” I was so excited when I first learned this– I feel like this theme really reflects our rare community, particularly our FPIES community, where I see all of you showing your stripes each and every day. Tell your story! 6. “At NORD, we invite all to participate in the Show Your Stripes campaign for Rare Disease Day. Show Your Stripes for Rare Disease Day! NORD Debuts Rare Disease Day 2020 Video Written by Laura Mullen on February 26, 2020. Launch a Show Your Stripes challenge and dare your community of family, friends and associates to show … 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. ! Wearing stripes on Rare Disease Day is a symbol of solidarity with the rare disease community. Take a picture and post on social media using the hashtags #ShowYourStripes and #RareDiseaseDay. Use #RareDiseaseDay. Print and use these Show Your Stripes stickers (printable on 3X4 Avery Labels). 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. 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. Join us at the museum on Saturday, February 29, 2020 to explore what it means to solve the case of your own rare disease! 356. This campaign takes its cue from the majestic zebra, known for its distinctive stripes. Wear striped gear (clothing and/or accessories with stripes) – and spread the word for others to wear stripes on Rare Disease Day. Don’t forget to check out their recent blog post, “10 Ways to Show Your Stripes This Rare Disease Day!” As always, we have great resources to learn more specifically about FPIES at our Foundation’s website. TOPIC: Featured News, Get Involved, Rare Disease Day. Thursday, February 28, 2019, is Rare Disease Day® in the United States. That number has increased each year, with thousands of events now taking place around the world. - Women's Long Sleeve Jersey T-Shirt. Rare in How We Care. S; M; L; XL; 2XL; Show Your Stripes for Rare Disease Day! Companies and organizations can participate by collaborating on a major striping concept … The coloring sheets are great for young kids and the word search would be appropriate for middle grades and upper elementary. Show Us Your Stripes Rare Disease Day is February 29. “February 29 only comes once every four years, making it the zebra of the calendar. Paint your face using brightly coloured face paints Pose for a selfie or group photo $33.49. 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. While each of the more than 7,000 rare diseases is unique, there are many commonalities that unite our community. Show your support. Companies and organizations can collaborate on a concept for Rare Disease Day. 7. Stripe your organization’s website for Rare Disease Day. 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 National Organization for Rare Disorders (NORD®) is sponsoring a “Show Your Stripes” campaign to raise awareness and show support for those living with rare diseases. Youth S; Youth M; Youth L; Youth XL; Show Your Stripes for Rare Disease Day! 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. Rare Disease Day is February 29. - Organic Short Sleeve Baby Bodysuit. 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. Today, NORD launched new patient assistance programs to assist people living w/, Print and use these Show Your Stripes stickers. 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