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Nov. 16, 2022

TOPIC: Press Releases, Featured News, Rare Disease Day

Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023

Posted by Rohan Narayanan

With 100 days till Rare Disease Day 2023, organizations and individuals across the country join the National Organization for Rare Disorders (NORD) to help make a difference for rare disease patients and families 

QUINCY, MA, November 16, 2022 — On February 28, 2023, the rare disease community worldwide will celebrate Rare Disease Day. 

 Now more than ever, it is important to highlight the challenges of rare disease. Over 25 million Americans and their families are living with a rare disease and 50% of those affected are children. 90% of all rare diseases have no FDA approved therapy, and so educating the public and encouraging their support is essential.

“We meet extraordinary people every day in our work,” said NORD President and CEO Peter L. Saltonstall. “The courage that patients and families display is an inspiration, and we think it’s critically important to bring the realities of living with a rare diagnosis to the forefront on Rare Disease Day.” 

Rare Disease Day is a patient-led international awareness campaign that highlights the challenges of the 300 million individuals impacted by rare diseases worldwide. In preparation for Rare Disease Day 2023, NORD is providing several opportunities to rally the community to raise awareness of the 7,000+ rare diseases that affect as much as ten percent of the population. 

Opportunities to get involved in Rare Disease Day include: 

  • Virtual Kick-Off: On Wednesday, November 30, 2022, at 1pm ET, NORD will host a public webinar to share opportunities to support the rare disease community. The event will highlight programs and engagement opportunities for individuals, volunteers, youth and schools, corporations, and other groups. Register here! 

    The NIH building in Washington, DC lit up for Rare Disease Day 2022

    The NIH building in Washington, DC lit up for Rare Disease Day 2022

  • Tell Your Story! “Just because you can’t always see a rare disease does not mean that it’s not there… Health equity means equal effort.” Read Grace’s Rare Disease Story. In the lead up to Rare Disease Day, NORD will feature many stories on our website and social media of people bravely overcoming challenges living with rare disease. We encourage people to share their rare disease stories!    
  • Light Up for Rare: As the official US sponsor for Rare Disease Day, NORD is leading the call to light up the country in rare disease colors (pink, green, blue, and purple) during February, to unite the rare disease community and the country as a whole. The more homes, buildings, landmarks, and monuments illuminated, the greater the impact! The goal of Light Up for Rare is to help spread the word and raise awareness for people living with rare diseases. More information on how to Light Up for Rare. 
  • #ShowYourStripes is a great opportunity to bring attention to rare diseases. As the zebra has become the official symbol of rare disease in the United States, NORD encourages people to wear striped clothing and accessories on Rare Disease Day to show support for those impacted by a rare disease and highlight participation on social media as part of the global conversation. For more information 

Events and opportunities to support the Rare Disease community will be highlighted on NORD’s Rare Disease Day website for the remainder of 2022 and throughout 2023.  

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With a 40-year history of advancing care, treatments and policy, the National Organization for Rare Disorders (NORD) is the leading and longest-standing patient advocacy group for the 25-30 million Americans living with a rare disease. NORD, a 501(c)(3) nonprofit, is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. For more information, please visit https://rarediseases.org/