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.
Race for 7 is an awareness run organized by Organization For Rare Disease India (ORDI) – a team committed to address the challenges of rare disease patients and their families in India. Race for 7 is a large-scale nation-wide Awareness Campaign organized by Organization for Rare Disease India (ORDI) in line with World Rare Diseases Day. Racefor7, the MEGA MARATHON for rare disorders has been a successful national awareness campaign that began in 2016 in Bengaluru. The number of participants…
Find out more »Rare Disease Day Advocacy Event at the State Capitol Wednesday, February 19, 2020 from 11:00am-2:00pm New Hampshire State House, Cafeteria 107 N Main St, Concord, NH 03303 There is no cost to participants to attend this event. Please join patients, families, caregivers, medical professionals and industry representatives at this important event to discuss with New Hampshire legislators the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their…
Find out more »Friday, February 21, 2020 Grant Sawyer State Office Building, Atrium, 555 E Washington Ave #5100, Las Vegas, NV. Join patients, families, caregivers, medical professionals, industry representatives and state legislators 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 Nevada. CLICK HERE TO REGISTER
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Registration is now open for the 3rd Annual Rare Disease Patient/Caregiver Symposium on February 22, 2020. This symposium is held each year in Alabama in conjunction with Rare Disease Day. We hope you will come to the 3rd annual Alabama Rare Disease Patient/Caregiver Symposium hosted by Alabama Rare, UAB Medicine, and Children’s of Alabama on February 22, 2020! The event is located at Children's of Alabama Bradley Lecture Center (4th Floor of the Children's Harbor Building). Located at 1600 6th…
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Rare Disease Day 2020 will be a family event, that will have different cultural and artistic activities for the families to enjoy. It will be a day for exchange and learning, which aims to generate awareness among the government and those who make decisions in patients' lives and can help them find solutions to improve their quality of life.
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Race for 7: Race for 7 is an awareness run organized by Organization For Rare Disease India (ORDI) – a team committed to address the challenges of rare disease patients and their families in India. Race for 7 is a large-scale nation-wide Awareness Campaign organized by Organization for Rare Disease India (ORDI) in line with World Rare Diseases Day. Racefor7, the MEGA MARATHON for rare disorders has been a successful national awareness campaign that began in 2016 in Bengaluru. The…
Find out more »Colorado Rare Disease Day 2020 Presented by Colorado Rare Action Network and Colorado Rare Thursday, February 27, 2020 from 8:30am-2:00pm Colorado State Capitol Building, 2nd Floor West Foyer 200 E Colfax Ave, Denver, CO 80203. patients, families, caregivers, medical professionals and industry representatives at this important event to educate Colorado legislators on 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…
Find out more »Thursday, February 27, 2020 from 9:00am – 2:00pm Convening in Room 104A Legislative Office Building, State St. and Washington Ave, Albany, NY 12224 There is no cost to participants to attend this event. Please join patients, families, caregivers, medical professionals, industry representatives and state legislators at this important event. A resolution acknowledging Rare Disease Day in the state of New York will be read on the floor. Please note, the time for the resolution hearing will be announced the week…
Find out more »Ohio Rare Disease Day 2020 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 participants to attend this event. 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…
Find out more »February 27, 2020 from 10:30am-2:00pm Kentucky State Capitol, 700 Capitol Avenue SW, Frankfort, KY 40601 Please join Kentucky Rare Action Network patients, families, caregivers, medical professionals, industry representatives and state legislators 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 Kentucky.
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