Events take place across the country in recognition of Rare Disease Day each year! You can get involved by attending or hosting your own event. How will you be spending the day or days leading up to Rare Disease Day? Tell the world! Find an event to attend listed here. If your event is not already listed, fill out this form so we can share it broadly on this website and through social media!
Outside of the United States, hundreds of events take place in honor of Rare Disease Day around the world! Our sister organization and founder of Rare Disease Day, EURORDIS, lists events taking place internationally.
Interested in hosting an event in your state? Submit your own event now. Want to get involved but don’t know where to start? View some suggestions.
Hosting a Rare Disease Day event in your hospital, school, community, or even virtually is a great way to commemorate the day and raise awareness for rare diseases. Use the resources below to help you plan the awareness event that you are imagining.
Whether it’s a lobby tabling event or something more elaborate, recognizing Rare Disease Day in your hospital or medical center makes an important statement about commitment to rare disease patients. Read about what others have done and download helpful resources here.
Students organize Rare Disease Day events in schools and universities across the U.S. and NORD is happy to help with suggestions, resources and – when possible – speakers. Campus events promote awareness and provide an important learning opportunity for students preparing for health-related careers. Events within grade schools help children and adolescents understand the challenges of those impacted by rare diseases at an early change and create a better sense of understanding.
Campus events promote awareness and provide an enriching learning experience for students preparing for health-related careers. Students should feel free to download and utilize the following resources to prepare for their university events. For more information about hosting these events, email [email protected].
How-To Guide: How to Host a University Event
How-To Guide: How to Host a Panel
For the past several years, NORD has provided a curriculum supplement for high school teachers to download and use for Rare Disease Day that has been very well received. That resource is available here, along with other suggestions for high school students and teachers.
Children of all ages can learn important lessons about understanding and acceptance through Rare Disease Day events with an anti-bullying message or other age-appropriate themes. For help in planning these events, check out the resources below.
Anyone can host a live event within their local community to raise awareness and participate in Rare Disease Day! The possibilities are endless and so we have developed resources to help you brainstorm event ideas and resources to then help you plan those events.
Rare Disease Day Events are not limited to in-person events and may take place online! These virtual events are a wonderful way to be include those who may be unable to leave their homes or their places of work on the day. Ideas for different types of Rare Disease Day events are listed below. In order to host a successful virtual event, online promotion is critical. Make sure to take a look at our 2019 social media toolkit for promotion tips.
What do you want your representatives to know? Rare diseases affect 25-30 million Americans. That equals considerable voting power. Advocacy Events are organized by NORD’s Rare Action Network® the nation’s largest advocacy network working to improve the lives of people impacted by rare diseases. The events provide the opportunity for advocates to bring much needed rare disease awareness to their communities and provide an opportunity to educate elected officials and teach them how to work alongside their constituents.
Are you hosting an event this year for Rare Disease Day? Submit it for publication on this website here in order to reach more people and show the impact of everyone’s efforts across the U.S.! Events submitted must be in the United States and can include, but are not limited to: a company’s lunch-and-learn for its employees, a patient organization’s community awareness event, a research symposium, a concert, a school program, a media event, and more. Rare Disease Day is a grassroots effort and we want to hear how you’re participating. This is a day for every member of the rare disease community – patients, caregivers, and those seeking to develop new and better treatments — to join together on behalf of our common goals.
Ohio Rare Disease Day 2020 Please join patients, families, caregivers, medical professionals and industry representatives at this important event to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Ohio. Thursday, February 27, 2020 at 10:00a.m. Registration opens at 9:00a.m. Harrington Discovery Institute University Hospitals 11407 Euclid Avenue, Floor 2, Cleveland, Ohio, 44106 There is no cost to…
Find out more »Each year on the last day of February, the rare disease community comes together to raise awareness for the 25-30 million Americans impacted by rare diseases. Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. It’s never too early to get involved! The National Organization for Rare Disorders (NORD) is…
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