Observe Rare Disease Day on the Last Day of February
Feb. 28 or 29 is Rare Disease Day
Many people suffer with diseases that others can’t understand, because so few other people have them. Rare Disease Day brings awareness of these diseases into the open.
It also highlights the challenges sufferers face.
We celebrate on the last day in February every year. So most years it’s on the 28th. But in leap years it’s on the 29th.
Rare Disease Day began in Europe in 2008, founded by the European Rare Disease Organization (EURORDIS) and the Council of National Alliances. The National Organization for Rare Disorders (NORD) in the US joined the celebration in 2009
By 2014, 84 countries were participating.
That first Rare Disease Day was on February 29. The founders chose that date because the 29th is a rare date, coming only once every four years. So it’s symbolic of rare diseases.
Each year has a different theme, too. The 2014 theme was “Join together for better care.”
EURORDIS hope to eventually have the World Health Organization officially recognize Rare Disease Day for the last day in February.
What are Rare Diseases?
Rare diseases are those which have fewer than 5 patients per every 10,000 people. Another definition, in the US, is one with fewer than 200,000 American patients.
The United States recognizes about 7000 rare diseases.
Most rare diseases are genetic (about 80%).
Because they are rare, there’s often little information about them, their causes or effective treatments. And researchers don’t focus on these diseases, either.
Although each disease is rare, combined they may affect as many as 30 million Americans. And of course, many more people around the world.
Scroll down for some ideas on celebrating this important unofficial holiday.
Ideas to Celebrate Rare Disease Day
Events to celebrate this day take place around the world. To find out what may be happening near you, the Rare Disease Day website offers links to events around the world.
Individuals
Help spread the word. Global Genes offers some suggestions here.
Consider supporting NORD. (Always do your own research before donating!).
Get more ideas here.
Schools
The NORD website offers ideas for in-school activities, too. In the Academic section of the Events page you’ll find ideas for Universities, high schools, and even elementary/middle schools.
Companies
Become a Partner with NORD. Then help spread the word.
Check out NORD’s Get Involved page for more ideas.
[…] Rare Disease Day: Rare diseases are those that few people have, even fewer have heard of, and for which research dollars are hard to come by. This day raises awareness of these diseases and the challenges sufferers face. And hopefully encourage research into these diseases too. […]