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Feb. 28, 2015

TOPIC: Uncategorized

NORD Announces #1in10 Campaign to Raise Awareness for Rare Disease Day® on February 28

Posted by Christina Jensen

 

Rare diseases affect 30 million Americans – raise awareness for these #1in10 people on Rare Disease Day.

Rare diseases affect 30 million Americans – raise awareness for these #1in10 people on Rare Disease Day.

The National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare disorders and official U.S. sponsor of Rare Disease Day® on February 28, announces a new social media campaign, #1in10, to raise awareness for the 1 in 10 Americans living with a rare disease.

“It’s astounding that there are just as many Americans living with a rare disease as there are people who are left-handed,” said Lisa Phelps, director of marketing and community relations at NORD. “We are launching this campaign for everyone who has a rare disease, their families, caregivers, nurses and doctors to help raise important awareness for this major public health issue and the need for safe, new treatments.”

– See more at: http://blog.rarediseases.org/nord-announces-1in10-campaign-to-raise-awareness-for-rare-disease-day-on-february-28/#sthash.5wniBZNG.dpuf

For the 7,000 known rare diseases, less than 400 have FDA-approved treatments.  There are 30 million Americans who have a rare disease—defined as one that affects fewer than 200,000 people—and two-thirds of these patients are children.  Many rare diseases are chronic and life-threatening.

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year), the rarest date on the calendar, to underscore the nature of rare diseases and the challenges patients face.  The worldwide awareness day was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations.

To help support the #1in10 campaign, NORD has launched the Instagram account, @rarediseasedayUS.  Instagrammers are invited to tag @rarediseasedayUS in their photos and celebrations to share what’s happening now for Rare Disease Day.  Instragram members are invited to use the official Rare Disease Day hashtags #RDD2015 and #RareDiseaseDay and follow Rare Disease Day on Facebook (/RareDiseaseDay.US) and Twitter (@RareDayUS).

– See more at: http://blog.rarediseases.org/nord-announces-1in10-campaign-to-raise-awareness-for-rare-disease-day-on-february-28/#sthash.5wniBZNG.dpuf

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