Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public.
Join NORD in Spreading Awareness for Rare Disease Day®, February 28
WASHINGTON, Jan. 28, 2021 /PRNewswire/ -- Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public. Rare Disease Day 2021 is coming up in thirty days, and the National Organization for Rare Disorders (NORD®) is inviting all to join in shining a light on the challenges faced by rare patients and families, as well as those still without a diagnosis, and the need for research into treatments and cures.
Launched by EURORDIS-Rare Diseases Europe in 2008, Rare Disease Day is the patient-led international awareness campaign that brings people together in solidarity with the 300 million patients impacted by rare diseases worldwide. In 2009, Rare Disease Day became a global event when NORD became the official sponsor of the celebration in the United States.
This year, NORD is asking individuals, organizations and companies in the US to help highlight rare disease issues and the need for continued progress in research and drug development. Taking action and “showing your stripes” to spread awareness can be done in a variety of ways, including by:
- Joining the Show Your Stripes movement and wearing stripes on Rare Disease Day, taking a photograph and posting it with a message of support on social media, using the hashtags #ShowYourStripes and #RareDiseaseDay. Discover more ways to Show Your Stripes here (http://bit.ly/RDD21-Get-Involved).
- Advocating for more than 25 million Americans impacted by rare diseases through participating in a NORD Rare Action Network™ (RAN) virtual Rare Disease Day event, in which key state policies affecting rare patients and families will be discussed. Register to take part in a RAN virtual Rare Disease Day event here (http://bit.ly/RDD21-Events).
- Pledging to help our rare community light up as many buildings and landmarks as possible in Rare Disease Day colors (blue, green, pink and purple) on or around February 28. This concept originated in 2019 when the Empire State Building in New York City was striped in Rare Disease Day colors thanks to the work of RocketPharma, a member of NORD’s Corporate Council. Find out more about NORD’s Light up for Rare (https://bit.ly/Light-Up-For-Rare) campaign and how you can participate.
- Watching Behind the Mystery: Rare and Genetic, the recurring rare disease series on the award-winning morning show The Balancing Act, airing on Lifetime Television. Premiering February 24 at 7:30am ET then streaming online at TheBalancingAct.com/Rare, the Rare Disease Day Special will feature NORD’s Lisa Sarfaty presenting facts on rare disease and how to get involved with the awareness day, and three patients sharing their inspiring stories: William Yank, a three-time leukemia survivor with his own podcast, clothing line and over 90,000 followers on TikTok; Kelly Barendt, a blogger and YouTuber with over 300,000 TikTok followers, relating her journey with Friedreich’s ataxia; and Travis Flores, a cystic fibrosis survivor and recipient of a very rare third double-lung transplant, sharing what he has learned from living with his condition.
“Rare Disease Day is an opportunity to enlighten the public about issues affecting rare disease patients such as overcoming health inequities - including the lack of understanding around rare conditions and challenges patients must face to even get an accurate diagnosis,” said Peter L. Saltonstall, President and CEO of NORD. “NORD’s mission is to ensure that all rare diseases have an accessible treatment or cure. Only then will our community have the equity it deserves.”
For more information on #ShowYourStripes, to download materials including a social media toolkit, media outreach templates, infographics and printable stickers, and to stay abreast of Rare Disease Day virtual events in the United States, be sure to visit rarediseaseday.us.
About the National Organization for Rare Disorders (NORD®)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.
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SOURCE National Organization for Rare Disorders (NORD)
