The National Organization for Rare Diseases (NORD) is asking Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness about rare diseases.
NORD is the US sponsor of Rare Disease Day on February 28. The annual awareness day highlights around 7,000 rare diseases that affect more than 300 million people around the world. More than 25 million Americans and their families are believed to be affected by rare diseases.
Participants are encouraged to light up or decorate their homes in blue, green, pink and purple at 7 p.m. local time on February 28. (Blue should be used if only one color is possible.) NORD suggests using NovaBright to illuminate a building. , monument, house or neighborhood in these colors of rare diseases.
To join the Light Up for Rare campaign, sign up here. Participants should complete the forms required by the monuments they pledge to illuminate, which could include historic buildings and homes, schools and universities, businesses, stadiums, bridges and monuments. A downloadable template request is available to ask cities and buildings to participate in the initiative.
Once the requests are approved, participants should notify NORD so that the organization can track the buildings that will be illuminated for Rare Disease Day.
Light Up for Rare is part of the Global Chain of Lights campaign, which aims to unite the rare disease community across the globe and symbolically break the isolation caused by the COVID-19 pandemic.
The European Organization for Rare Diseases (EURORDIS), NORD’s counterpart in Europe, is coordinating the February 28 awareness day there with several patient advocacy groups. In leap years, Rare Disease Day falls on February 29, the rarest day of the year.
Download the Light Up for Rare Toolkit here. Here you will find information on how to illuminate a building.
The general public, as well as caregivers, healthcare professionals, researchers, clinicians, policy makers and industry representatives are encouraged to participate in Rare Disease Day advocacy and events. Other toolkits and resources for Rare Disease Day are available here.
After buildings and monuments are lit up in Rare Disease Day colors, attendees are encouraged to share photos and videos on social media. Please use the hashtags #RareDiseaseDay and #ShowYourStripes so that efforts can be highlighted.