Dec. 21, 2017
TOPIC: Advocacy, Events, Get Involved
Posted by Lisa Sencen
Each year, individuals around the globe come together for one special day to recognize and raise awareness for rare diseases. This day, Rare Disease Day® (RDD), takes place on the last day of February each year. The next RDD will fall on February 28, 2018.
To make the largest impact possible, NORD is challenging each advocate to get involved in one way or another. Together, we can ensure that as many people as possible are aware of rare diseases and the issues that our community faces.
Will you join us?
Our website, rarediseaseday.us
, is updated with plenty of resources to help you get involved including social media activities, downloadables, event ideas, links to register for events in your communities, and more!
NORD’s 7,000 Mile Rare Movement
The 7,000 Mile Rare Movement is a new and exciting virtual campaign hosted by NORD as part of Rare Disease Day. The campaign challenges YOU to join other advocates in the rare disease community in seeking pledge dollars to walk, run or bike 7,000 miles collectively throughout the month of February. Proceeds from this campaign will go towards NORD’s programs and services.
Rare Action Network™ Advocacy Events
NORD’s Rare Action Network, the nation’s largest advocacy network working to improve the lives of people living with rare diseases, hosts advocacy events across the United States. These events provide the opportunity for advocates to educate elected officials in their states about the issues that rare disease patients are facing. Events are already being planned by volunteers!
Rare Disease Day® is sponsored and hosted in the U.S. by the National Organization for Rare Disorders (NORD)
®. NORD is a member of the National Alliances, a group of umbrella organizations that work with Rare Disease Day founder, EURORDIS, to organize and present Rare Disease Day around the world. Visit the global site here