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Mar. 7, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Patients & Members

Another Successful Rare Disease Day®

Posted by Christina Jensen

Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018.  On this day, everyone RDD-LOGO-18-stickycomes together globally to bring attention to all 7,000 rare diseases that combined affect 30 million Americans–or 1 in 10 of us–and millions more around the world. NORD is proud to be the U.S. sponsor of Rare Disease Day to help raise awareness and make the voices of rare diseases heard. In 2018, we saw exponential growth in the awareness campaign.

Success in First-Ever 7,000 Mile Rare Movement

New this year, NORD organized an exciting campaign for Rare Disease Day which challenged rare disease advocates to join together in seeking pledge dollars to walk, run or bike 7,000 miles collectively throughout the month of February. In representation of all 7,000 rare diseases, over 100 individuals came together to move and raise awareness. Participants shared their stories about why they joined the cause to move in honor of rare. The campaign exceeded our expectations and we were incredibly humbled to see that these individuals exceeded the goal of 7,000 miles and moved a total of almost 12,000 miles together before Rare Disease Day. The money raised by participants will benefit NORD’s programs and services which work towards improving the lives of patients and families impacted by rare disease. Interested in joining the movement in 2019? Please email the team at for more information.

Hands Raised for Rare Disease Research

RaiseYourHandgraphicFor the ninth year, NORD partnered with the pharmaceutical company Lundbeck on the “Raise Your Hand to Fight Rare Disease Research” campaign, which supports rare disease research in celebration of Rare Disease Day. The campaign simply asks for individuals to click on a Raise Your Hand page on the website in order to trigger a $1 donation from Lundbeck, up to $10,000. The funds are then donated by Lundbeck to a rare disease research fund at NORD. In 2017, the funds raised were awarded to research grants for the study of Cat Eye Syndrome. The community rallied together in support of rare disease research at NORD to ensure that the goal of 10,000 clicks was accomplished. Once again, our goal was exceeded and this year, the community clicked over 16,000 times to support rare disease research! Thank you to all those who helped us reach our goal! Learn more about NORD’s research programs to support research year-round!

Events Around the Country

One of the most impactful ways to get involved in Rare Disease Day is by hosting events out in the community. Each year, NORD receives event submissions from advocates across the country to share on the site. This year, 178 events were submitted to the US website for promotion. Some events included 5Ks, events in schools, in a local library and more. Thank you to all those advocates who worked hard on planning these events to make an impact! IMG_6440 (1)

In addition, NORD’s Rare Action Network™ hosted Advocacy Events across the U.S. These events bring the patient voice directly in front of elected officials to ensure that they understand the challenges that the rare disease community face. We saw a growth in these events this year in that the attendance was larger and the presentations from speakers were highly impactful. 22 Advocacy Events have already been hosted and 13 more are being hosted in March and April! Check our website to see if an event is happening near you. 

NORD’s Education team supported over 20 academic events across the country in 2018. Students hosted these events at universities like Notre Dame, McGill School of Medicine, Georgetown School of Medicine, Keck Graduate Institute and more to raise awareness for rare diseases among the general public and their classmates. NORD believes that educating students about rare diseases is a critical component to improving the lives of rare disease patients in the future and these events each year help us to do that! Learn more about NORD’s student programs here.

Handprints Across America® Goes Social

rddus18-nord-haa-staff-photoNearly 550 individuals came together to share their stories for our Handprints Across America campaign! This campaign was developed to help show the impact of Rare Disease Day across the United States each year. Individuals download the year-specific, Handprints flyer, print it out, and share the photo with their personal story about their journey with rare disease and why they recognize Rare Disease Day. The campaign was revitalized this year in that it was the first year that NORD hosted the campaign using social media. Because of the increasing popularity and importance of social media, rather than taking in submissions from people off of our website, NORD utilized social media to gather submissions using a hashtag which helped to increase the visibility of stories shared. We look forward to growing upon this campaign in 2019! To view the gallery, click here.   

Increasing Reach on Social Media

The NORD team emphasized its efforts on social media this year for Rare Disease Day due to the increasing popularity and importance of social mediaTweetChat in 2018. Together, through sharing and engaging, we are able to reach a new number of people that we were unable to reach before, making our awareness efforts much easier! In addition to NORD’s Handprints Across America campaign, our Rare Disease Day Facebook page shared infographics to educate and raise awareness. On the 28th, an infographic was shared explaining what a rare disease is. Through sharing, commenting, and reacting to the post, this image reached 158,000 individuals on Facebook! What an incredible number of people who now are more aware of rare diseases simply by sharing an image. Additionally, NORD hosted a tweetchat (#RDD18Chat) which educated participants on “What to Do if You or Your Child Receive a Rare Disease Diagnosis” with Boston Children’s Hospital and The Mighty. The conversation was buzzing with information, stories shared, and questions asked and answered. In total, the conversation reached 1.6 million users on Twitter and garnered almost 19 million impressions! Finally, the global hashtag for Rare Disease Day, #RareDiseaseDay, was used over 100,000 times. 

These numbers are outstanding, showing that together we can truly accomplish a tremendous amount of awareness for rare diseases by participating in Rare Disease Day. Don’t stop the momentum that we have gained and continue making an impact by staying involved throughout the year! Sign up for news from NORD to learn about ways to stay engaged.

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