Rare Disease Week on Capitol Hill : February 25-March 1
Join advocates, patients, and parents from all over the country on Capitol Hill for a week filled with advocacy events. Click on the title above to sign up for events and find out more information about Rare Disease Week.
If you are unable to attend in person you can follow along with agenda for the Monday Legislative Conference and livestream the event.
Rare Disease Day Hosted by NORD: February 28
Follow Rare Disease Day USA, throughout the day they will be posting about rare disease and sharing patient stories. They also provide sample rare disease day posts and letters you can send to your local newspaper.
Join BDSRA in the Rare Disease Day Hands Across America campaign. To participate follow this link, download the flyer, and take a picture with it. Let’s flood Facebook, Instagram, and Twitter with our #HandprintsAcrossAmerica !
Global Genes World Rare Disease Day: February 28
Visit the Global Genes World Rare Disease Day page for more tips on how you can participate in Rare Disease Day, including their “I Love Someone Rare” social media profile picture frame
National Institutes of Health (NIH) Rare Disease Day Celebration: March 1
BDSRA Executive Director, Margie Frazier, PhD, will be speaking on the National Institutes of Health Rare Disease Day Panel, Collaborating for Successful Research on March 1st at 10:45am EST . You can watch the live stream of the panel here at the time of the event.
