Today is Rare Disease Day, a global holiday celebration to raise awareness among the public and decision-makers about the challenges faced by the over 25 million Americans and nearly 300 million people globally impacted by rare diseases, as well as all those still without a diagnosis. The National Organization for Rare Disorders (NORD) is the official US sponsor of Rare Disease Day.
Rare Disease Day was first celebrated in 2009 in the United States, and the theme for 2022 is health equity.
“Health equity means that everyone has a fighting chance to live their healthiest life because they have equal access to the medical expertise, treatment and support services necessary to do so,” said Peter Saltonstall, President and CEO, NORD. “Right now, the rare disease community is more often holiday fighting for recognition and acknowledgment, rather than the care, treatment, access, research, community, or cures they seek and deserve. Rare individuals and families need to know they are not alone and there are things everyone can do – on Rare Disease Day and every day of the year – to help support all those living with rare diseases.”
As the official US sponsor of Rare Disease Day, NORD is:
Hosting a virtual event today at 1:30pm ET, featuring inspiring patient stories and celebrity appearances. RSVP. Helping drive a global chain of lights (#LightUpForRare), illuminating buildings, monuments and landmarks including the Empire State Building in Rare Disease Day colors, to raise awareness for those living with a rare disease.Elevating over a dozen patient stories on the NORD blog in the lead up to Rare Disease Day, to shine a light on a variety of disorders and experiences. Read more or share your story.Distributing resources for public use, including social media graphics, zoom backgrounds, template letters to the editor, and more. Access available resources.
With each passing holiday, February 28 has continued to grow into an essential celebration to engage the rare community, elevate the stories of patients and families, and drive donations, the creation of new critical resources and innovative research in the rare disease space. To learn more and find ways to get involved, 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 300 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.
This article was shared with Prittle Prattle News as a Press Release.
