Rare Disease Day is an observance held on the last day of February to raise awareness about diseases that most people will not know of, as well as to improve access to treatment. It’s important for average people to get more informed about the ways that rare diseases affect individuals and create a space where there are more opportunities to show support and perhaps even help in some ways.
EURORDIS (The European Organization for Rare Diseases) says that treatment for many rare diseases is insufficient, and some people’s quality of life is greatly hindered by inequality, simply because people have never heard of their disease, or do not understand the disease and the patient’s needs.
History of Rare Disease Day
Since 2008, EURORDIS has been putting in place social networks to help support individuals with rare diseases and their families, as well as coordinating events for Rare Disease Day at an international level. The first time the event was celebrated, the day took place in leap year, so it was observed on February 29. In non leap years, the day is celebrated on February 28.
The reason the month of February was chosen for this celebration is because it is also a “rare” month, in that it sometimes has an extra day at the end. So the common theme offers a nod to the uniqueness of the people who experience rare diseases by placing it on a unique and special day.
Each year, the celebration of the day looks a little different too. For instance, in 2010, Rare Disease Day featured balloon releases, marathons, auctions and tree planting events to raise awareness. These types of events can be sponsored by all sorts of different communities, health care centers, hospitals, charitable foundations and so much more.
Starting 2011, Rare Disease Day began sponsorship by the National Institutes for Health (NIH), specifically by the National Center for Advancing Translational Sciences (NCATS). The hope is that the collaboration between a wide variety of scientists, researchers, medical professionals and others will bring more attention to rare diseases with the hope of finding treatments and cures.
How to Celebrate Rare Disease Day
Show support for Rare Disease Day by observing the day with some of these ideas:
Share Rare Disease Experiences
Each year, people affected by rare diseases are encouraged to share pictures and their stories with the world. The Rare Disease Day website offers opportunities for folks from all over the globe to learn more about each other by posting their own stories and reading other people’s stories. The website contains hundreds of stories in many languages, creating a worldwide community of people with rare diseases who can feel more seen and heard.
Attend a Rare Disease Day Event
Get connected with people in the local community or across the planet by joining in with events for Rare Disease Day, whether online or in real life. Check out the Rare Disease Day website for more information about events that are taking place in many countries and a wide range of languages.
Host a Rare Disease Day Event
Those who are interested in raising awareness and promoting the stories of those who have rare diseases may be interested in hosting an event in their local community or online. Whether it is an informal gathering of friends to raise awareness and support, a book club where a biography of a person with a rare disease is discussed, or an informational gathering with a medical professional as a guest speaker, the opportunities are almost endless. The Rare Disease Day website offers plenty of resources including downloadable kits, info-packs, posters and many other tools.