The purpose of World Rare Disease Day is to harness the creative energy of the millions of people around the world with rare diseases — as well as that of all the people who care about and assist them — to help others understand certain fundamental issues that need to be addressed. In 2012, we believe we accomplished that! Thanks to the participation of hundreds of people across the country we truly increased the level of awareness and impact on this one day.
We would like to continue many of the activities from Rare Disease Day. You can read about the successes associated with the different activities to start thinking of ways you might like to participate next year. Thank you for all you did to help make Rare Disease Day in the US a success!
Also, don’t forget that you can pick up your Rare Disease Day gear at the NORD cafepress store.
Access the Rare Disease Day US press kit and learn how to share your story with your local media. This press kit will make it easy for you to share the general theme and messages of the day, as well as how best to share your story. Sharing experiences helps people understand what it is like to live with a rare disease. More >
Send us a picture of you holding up the Rare Disease Day logo anywhere in the United States. We will add this to our Handprints across America Gallery. More >
One way almost anyone can help raise awareness for Rare Disease Day, is to Write Your Reps in Congress to help teach them about rare diseases. The more informed our legislators are about rare diseases and the millions of Americans living with them, the better they will be able to act on issues we all care about. More >
Become a Partner or Ambassador
Become a Rare Disease Day Partner (for organizations, agencies, societies, and companies) or Become a Rare Disease Day Ambassador (for individuals). By signing up and showing your support, you can share why Rare Disease Day is important for you and get updates about the day. More >
This year we are providing resources to help bring Rare Disease Day into the schools. Access the sample curriculum for a lesson on rare diseases for high school students and another age appropriate lesson plan for middle and elementary school students. We also have other suggestions of what you can do in the schools. More >
Create a picture or short story depicting what this year’s international theme, Solidarity, means to you. We want children and adults to participate and share how you interpret “Rare but strong together.” We will display it in our Visions of Solidarity Gallery. More >
NORD is also looking to compile a physician database identifying rare disease experts throughout the country. To learn more about this initiative, see if your doctor qualifies, or add someone’s name. More >
Access the Rare Disease Day countdown badge and post it on your website, blog, or social media site. More >
Still unsure what you can do to take action for Rare Disease Day? Whether you are an individual, organization, company, or student, we have tools and suggestions for you! More >