Our talented NORD volunteer community ambassadors are hard at work planning events throughout February and March for Rare Disease Day. These events are your chance to connect with other people and families living with rare diseases and supporters in your state.
During the events, community members - including patients, caregivers, friends, advocates, healthcare professionals, and elected officials - are invited to come together. You will make connections, learn about local resources and services to help in your rare journey, and celebrate Rare Disease Day.
Join us at one of these free, in-person or virtual events. All ages are welcome to attend. Attendees are encouraged to wear striped apparel as part of the "Show Your Stripes" campaign. In doing so, you will help raise awareness and generate community-wide conversation on the challenges of living with a rare disease.
Visit your Rare Action Network state profile page to learn if there is an event happening near you. To learn more about ways to get involved for Rare Disease Day and to share your plans with others, visit our website.
People from across the country have pledged buildings, monuments, and landmarks for our #LightUpForRare campaign. Visit our website for a guide on how to participate, a letter template to use for outreach, and more to help you join in the effort to light up a landmark this Rare Disease Day. Don’t forget - once the buildings and landmarks are lit up in Rare Disease Day colors, share a picture on social media and be sure to tag NORD. Use #RareDiseaseDay and #LightUpforRare so the entire community can see what you have done to shine a light on rare disease!
Our mission: We improve the health and well-being of people with rare diseases by driving advances in care, research, and policy.Learn more at:rarediseases.org
