On Wednesday, February 28, people all over the world will celebrate Rare Disease Day. EURORDIS, a nongovernmental alliance of organizations and individuals in the field of rare diseases, founded the event in 2008. In 2009, the US-based National Organization for Rare Disorders (NORD) launched the yearly observance in the United States. Held on the last day of February, the day increases awareness about rare diseases among the public, healthcare professionals, researchers, companies and politicians.
Bleeding disorders such as hemophilia, von Willebrand disease and other factor deficiencies are of course among the 7,000 rare diseases that affect some 30 million Americans. People with bleeding disorders face many of the same challenges as those with other rare diseases, including difficulty obtaining a correct diagnosis and receiving and paying for proper treatment. Rare Disease Day is an opportunity for the bleeding disorders community to create alliances with the larger rare diseases community.
Research is the global theme for Rare Disease Day 2018, with the slogan “Patients are not only subjects but also proactive actors in research.” Events are taking place across the country on Wednesday and also throughout March, including an event March 1 at the National Institutes of Health in Bethesda, Maryland. Here’s how you can participate:
Check out Rare Disease Day 2018 events
For the most complete listing of Rare Disease Day 2018 events by state, visit the events page on the NORD website. Also check your chapter’s website and social media feeds to see what’s happening in your area.
Take part in the #ShowYourRare face paint campaign
#ShowYourRare is a global interactive face paint social media campaign to raise awareness of rare diseases and display support for the community. Post a photo of yourself or a group on your preferred social media channel with your face painted and use the hashtags #ShowYourRare, #MyRare or #RareDiseaseDay. Learn more here.
Share the Rare Disease Day 2018 official video
Featuring patients, family members, researchers and doctors, this inspiring video shows the wide range of people affected by rare diseases and involved in fighting for progress in research. Read the stories of the video’s stars at RareDiseaseDay.org.
Follow all the Rare Disease Day 2018 happenings at these websites and social media accounts: