The purpose of Rare Disease Day is to harness the creative energy of the millions of people around the world with rare diseases — and the millions who care about and assist them— to raise awareness and generate action. You can help us achieve this goal throughout the year by doing any or several of the following things.
Also, don’t forget that you can pick up your Rare Disease Day gear at the NORD cafepress store.
Become a Rare Disease Day Partner (for organizations, agencies, societies, and companies) or a Rare Disease Day Ambassador (for individuals). By signing up and showing your support, you can share why Rare Disease Day is important to you. You’ll also receive regular updates from NORD about what others are doing. More >
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 >
In response to requests from parents and teachers, we are providing resources to help bring Rare Disease Day into the schools. Access the Rare Disease Day curriculum supplement for high school health and biology students, as well as other age-appropriate materials for middle and elementary school students. More >
NORD will make it easy for you to write to your elected officials in your state and Congress and to President Obama with a Rare Disease Day message. This is an important way to tell your elected officials that you vote and that rare diseases are an important issue to you. More >
Access the Rare Disease Day countdown badge and post it on your website, blog, or social media site. More >
Other Suggested Activities
Rare Disease Day is for everyone. We encourage everyone to get involved. If you haven’t yet found a way that feels right for you, join the conversation on Facebook to learn what others are doing.