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Jan. 16, 2018

TOPIC: Advocacy, Get Involved, Press Releases

NORD Launches 7,000 Mile Rare Movement

Posted by Laura Mullen
 THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) LAUNCHES 7,000 MILE RARE MOVEMENT CHALLENGING AMERICANS TO CHART 7,000 MILES DURING MONTH OF FEBRUARY
Americans to walk, bike or run 7,000 miles during February bringing awareness to 7,000 rare diseases affecting 30 million Americans

Danbury, Conn., Jan. 16, 2018— The National Organization for Rare Disorders (NORD)®, the leading nonprofit organization dedicated to helping the 30 million Americans with rare diseases, today announced its new 7,000 Mile Rare Movement, challenging Americans to pledge dollars to walk, run or bike 7,000 miles collectively throughout the month of February. The 7,000 miles represent the 7,000 known rare diseases, most of which are life-altering and do not yet have a treatment or cure.

The movement will kick off Feb. 1 and run through the end of the month, culminating on Rare Disease Day on Feb. 28. Proceeds from the 7,000 Mile Rare Movement will support research grants, patient services, education and more for the millions suffering from rare diseases in America.

“We are inviting everyone—families, friends, advocates, patients and the general public—to join us in actively raising awareness and funds through our new 7,000 Mile Rare Movement,” said Peter Saltonstall, NORD president and CEO. “Our hope is that together, we challenge the community to do something new and different and get involved to make a tangible impact for the 30 million Americans dealing with a rare disease today.”

Those who want to get involved in the movement can sign up starting today at Pledgeit.org/give/nord and begin tracking miles! Participants can sign up as individuals or as a group to reach the 7,000 goal. On their PLEDGEIT profile, participants can highlight why they are supporting the movement, and share with friends, family, colleagues, and employers to request support for their hard work. Registrants will also have the option to purchase a participant pack which includes a T-shirt to wear on Rare Disease Day, a commemorative medal, and a supporter bracelet.

Participants are also encouraged to get involved on social media by using the hashtags: #RareDiseases and #RareDiseaseDay throughout the program to encourage awareness on a broader scale.

One Response to “NORD Launches 7,000 Mile Rare Movement”

  1. Valerie Maschal says:

    I am SO PLEASED to have “subscribed” to ALL OF THE WEALTH OF INFORMATION that is coming my way from NORD! “THANK YOU” seem like such SMALL words…to use….but, I can’t think of any better….so, THANK YOU THANK YOU THANK YOU …from the bottom of my heart! February 2018 should be EPIC…what wonderful folks assisting…..! -V

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