Rare Disease Report

Rare Disease Day 2018 Starts with 7,000 Mile Trek

JANUARY 16, 2018
Mathew Shanley
Each year, Rare Disease Day is held on the last day of February to give patients, caregivers and advocates a platform to stress the importance of raising awareness for the community, and educate those who may not be immersed in it.

The National Organization for Rare Disorders (NORD), the leading nonprofit organization dedicated to helping Americans with rare diseases, announced this morning that its 7,000 Mile Rare Movement will be kicking off this year’s celebration.

The initiative challenges Americans to pledge dollars to walk, run or bike 7,00 miles collectively throughout the month of February, each mile representing one of the 7,000 known rare diseases.

The first Rare Disease Day was held in 2008 as an effort to improve access to treatments and medical representation for individuals with rare disease and their families. Though it was celebrated only in Europe and Canada the first year, the U.S. and 5 other countries have since joined in the observance.

The lack of scientific knowledge and quality information on rare diseases can often result in a delay in diagnosis, resulting in heavy burdens – both social and financial – on patients and their families.

The 7,000 Mile Rare Movement officially kicks off on February 1 and runs through the end of the month, culminating on Rare Disease Day on February 28. All proceeds will support research grants, patient services, education and more for the millions who suffer from uncommon conditions in the United States.

“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 in a press release. “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.”

At the time of this writing, there are 17 teams participating in the Movement. Those interested can register for NORD’s virtual movement challenge by selecting the team that best matches the initiatives he or she would like donations to support, and then creating a personal fundraising campaign. After the campaign is launched, people are encouraged to get out and start moving.

Walkers, runners and bikers of all experience are welcome, and progress can be tracked on the leaderboard on the NORD’s PLEDGEIT website. 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.

Participants are also encouraged to get involved on social media by using the hashtags: #RareDiseases and #RareDiseaseDay.

For more information on the 7,000 Mile Rare Movement and other advocacy events like this, follow Rare Disease Report on Facebook and Twitter.

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