Welcome to Rare Disease Day in the USA!
More than 800 patient organizations, government agencies, educational institutions, clinical centers, and companies have signed on as Rare Disease Day Partners in the U.S., which means they support the global theme and goals of Rare Disease Day. View the list of U.S. Rare Disease Day Partners on the Rare Disease Day US site (www.rarediseaseday.us).
In 2013, the National Organization for Rare Disorders (NORD), and the US sponsor of Rare Disease Day, is celebrating our 30th anniversary and the 30th anniversary of the 1983 signing of the Orphan Drug Act into legislation. All year long, NORD will be celebrating how far the rare disease community has come both in awareness and treatment. Read more about NORD’s 30th Anniversary plans.
Some of the ways you can get involved in Rare Disease Day in the United States include:
- Plan or participate in a State House Event. These events will be conducted at state capitols and state houses around the country to help raise awareness of issues that are relevant at the state level
- Utilize this press kit with resources to help you reach out to your local media or share your story online. Sharing experiences helps people understand what it is like to live with a rare disease.
- Submit an image to “Handprints Across America,” which aims to show the impact of Rare Disease day across the nation through photographs. View what has already been submitted.
- Download the High school curriculum project, which outlines possible school activities in order to educate students about rare diseases.
- Join us for the 24-hour “Handprints On The Hill,” this is one of the easiest ways to participate in Rare Disease Day US and to help inform your elected officials about the challenges of living with rare diseases
- Submit the name of a researcher who has made an impact on the rare disease community to the Rare Disease Research Hall of Fame.
- View other events that are happening across the country
- Join us on Facebook and Twitter
More information on these or any other US based initiatives can be found on the Rare Disease Day US website.
NORD salutes EURORDIS for its leadership in establishing Rare Disease Day. We are happy to join the global rare disease community in supporting this important awareness initiative! As our Partners in the U.S. post news on the U.S. website about planned activities, we'll also share it here. During this 30th year celebration of NORD and the Orphan Drug Act, and specifically on -- February 28th -- we celebrate the solidarity of patients and families affected by rare diseases, as well as of those seeking to improve their lives, around the world!
NORD (the National Organization for Rare Disorders) is committed to the identification, treatment, and cure of rare diseases through programs of education, advocacy, research and patient services. NORD is the national alliance for rare disease patient organizations in the USA.