Rare in How We Care. Check out NORD’s social media toolkit for ideas. TOPIC: Featured News, Get Involved, Rare Disease Day. Stripe your organization’s website for Rare Disease Day. 5. 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. 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. 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! 10 Ways to Show Your Stripes! It is a truly rare day that the National Organization for Rare Disorders is proud to lead,” said Peter L. Saltonstall, President and CEO of NORD. Use social media to bring awareness to your disease and rare disease in general. Dare your company or organization to collaborate on a major striping concept for Rare Disease Day. Wear striped gear (clothing and/or accessories with stripes) – and spread the word for others to wear stripes on Rare Disease Day. 3. Tell your story! 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. Stripe your organization’s website for Rare Disease Day. Pitch your local media outlets about your Rare Disease Day event and/or your personal story using these templates. 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. Living Rare, Living Stronger 2020 Virtual Zebra. 4. 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. 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. NORD Debuts Rare Disease Day 2020 Video Written by Laura Mullen on February 26, 2020. Companies and organizations can participate by collaborating on a major striping concept … Youth S; Youth M; Youth L; Youth XL; Show Your Stripes for Rare Disease Day! Showing your stripes means embracing one’s uniqueness and expressing support for the approximately 300 million people worldwide living with rare diseases. $33.49. 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. Companies and organizations can collaborate on a concept 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. While each of the more than 7,000 rare diseases is unique, there are many commonalities that unite our community. Washington, DC, January 16, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes, with a call to action for people to literally and figuratively “show their stripes” in support of rare diseases leading up to and on 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! 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. 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. Take a picture and post on social media using the hashtags #ShowYourStripes and #RareDiseaseDay. The National Organization for Rare Disorders (NORD) is encouraging the rare disease community to get involved on Rare Disease Day through a #ShowYourStripes campaign. 1. Wearing stripes on Rare Disease Day is a symbol of solidarity with the rare disease community. 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. Show Us Your Stripes Rare Disease Day is February 29. Show your support. 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. 7. Thursday, February 28, 2019, is Rare Disease Day® in the United States. Facebook Twitter Pinterest e-Mail. 2. One in ten Americans suffers from a rare disease, a disease affecting less than 200,000 people. Show Your Stripes. ! 10. Wear striped gear (clothing and/or accessories with stripes) – and spread the word for others to wear stripes on Rare Disease Day. Print and use these Show Your Stripes stickers (printable on 3X4 Avery Labels). Just as the zebra’s stripes are unique in the animal kingdom, those with a rare disease are also unique, though not alone. 8.Print and color in this zebra coloring sheet – and don’t forget to share your art on social media! It’s simple to take part! NORD is a registered 501(c)(3) charity organization. Washington, DC, January 16, 2020–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! Copyright ©2020 NORD - National Organization for Rare Disorders, Inc. All rights reserved. Use the hashtags #ShowYourStripes and #RareDiseaseDay, add a brief explanation and challenge others to do the same. previous image. Today, NORD launched new patient assistance programs to assist people living w/, Print and use these Show Your Stripes stickers. 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. Information on Clinical Trials and Research Studies, COVID-19 Rapid Response Leadership Series, 5 Myths About Orphan Drugs and the Orphan Drug Act. - Women's Long Sleeve Jersey T-Shirt. Show your stripes for Rare Disease Day on February 28th! 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 #Show Your Stripes. Change your profile picture using our Facebook Profile Picture Frame! 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. 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 … - Kids‘ Premium Hoodie. Information on Clinical Trials and Research Studies, COVID-19 Rapid Response Leadership Series, 5 Myths About Orphan Drugs and the Orphan Drug Act. 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!” More designs. 71. Incredibly, there are 7,000 such diseases, prompting a saying in the field, “While a rare disease is rare, rare diseases are common.” Rare Disease Day began in 2008. S; M; L; XL; 2XL; Show Your Stripes for Rare Disease Day! That number has increased each year, with thousands of events now taking place around the world. 3. 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: Press Releases, Featured News, Advocacy, Rare Disease Day. The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States. 6. Launch a Show Your Stripes challenge and dare your community of family, friends and associates to show … ! Show Your Stripes for Rare Disease Day! $17.49. 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. 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 each of more than 7,000 rare diseases is unique, there are many commonalities that … “At NORD, we invite all to participate in the Show Your Stripes campaign for Rare Disease Day. “February 29 only comes once every four years, making it the zebra of the calendar. The coloring sheets are great for young kids and the word search would be appropriate for middle grades and upper elementary. “February 29 only comes once every four years, making it the zebra of the calendar. Use #RareDiseaseDay. $22.99. 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. - Organic Short Sleeve Baby Bodysuit. Rare Disease Day is recognized annually around the world on the last day of February to raise awareness about rare diseases and the issues patients face. The big day is here! 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. Please note that NORD provides this information for the benefit of the rare disease community. Rare Disease Day is February 29. 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. NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®! It’s Rare Disease Day, time to wear your stripes to raise awareness about rare diseases and the effect they have on patients’ lives. It is a truly rare day that the National Organization for Rare Disorders is proud to lead,” said Peter L. Saltonstall, President and CEO of NORD. 10 Ways to Show Your Stripes this Rare Disease Day! This year's #ShowYourStripes theme reinforces that, like rare disease patients, we … 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. 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.”. Show Your Stripes for Rare Disease Day! Feb 20, 2019 The Zebra, with its distinctive stripes, is the official symbol of Rare Diseases in the United States. LRLS Logo. Post messages on social media to spread the word about Rare Disease Day and stripes – here are some tips and sample posts. NORD Face Mask. For more information on Show Your Stripes and to stay abreast of other Rare Disease Day 2019 events and initiatives, visit www.rarediseases.org. 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. - Women's Flowy Tank Top by Bella 356. Today is Rare Disease Day and it's time to Show Your Stripes! Tags: Rare Disease Day, eurordis, Peter L. Saltonstall, Show Your Stripes, Council of National Alliances. Share your story and why Rare Disease Day matters to you. Show your Stripes! How are you getting involved? On February 28th, we shared a pot luck lunch with a striped food theme and dressed to show off our stripes. Today is Rare Disease Day 2020 Rare Disease Day is today, 29 February as it is a leap year. 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. NORD is a registered 501(c)(3) charity organization. This could be as elaborate as wrapping a car in stripes, or as simple as encouraging employees to wear stripes for the day. In the United States any disease affecting fewer than 200,000 people is considered rare. 2. Tags: Rare Disease Day, Raise Awareness, Get Involved, #RareDiseaseDay, Show Your Stripes, #ShowYourStripes. One lucky entry will win a $100 Amazon gift card for the most creative interpretation of a zebra’s stripes! Because of leap year, this special day will be recognized Saturday on the rarest of days in the calendar — February 29, 2020. 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. 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. Share. Living Rare, Living Stronger 2020 Virtual Zebra. This campaign takes its cue from the majestic zebra, known for its distinctive stripes. “At NORD, we invite all to participate in the Show Your Stripes campaign for Rare Disease Day. 9. The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day® centering on three simple words: Show Your Stripes™, with a call to action for people to literally and figuratively “show their stripes” in support of rare diseases leading up to and on Rare … 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. Join us at the museum on Saturday, February 29, 2020 to explore what it means to solve the case of your own rare disease! Share your story and why Rare Disease Day matters to you. Why is this day important to you? The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day® centering on three simple words: Show Your Stripes™, with a call to action for people to literally and figuratively “show their stripes” in support of rare diseases leading up to and on Rare … NORD is proud to join EURORDIS as the official US sponsor. 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. 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