Started as a European campaign to raise public awareness of rare diseases and their impact on patients and their families, Rare Disease Day has become a global phenomenon with over 80 participating countries. It is celebrated toward the end of February.
The US got involved in 2009 with a coalition of supporters including the National Institute of Health (NIH) and other government entities.
Supplementally Speaking joins the NIH in helping raise awareness of rare diseases that may impact you, a loved-one, a friend or community member.
What qualifies as a rare disease?
According to RareDiseaseDay.uslink opens in a new window, a rare disease is any disease, disorder, illness or condition affecting fewer than 200,000 people in the US. They affect 1 in 10 Americans, or more than 30 million people, collectively. 50% of rare diseases affect children.
To look at this another way, consider that nearly 86 million Americans suffer from cardiovascular disease,1 yet there are more Americans who live with a rare disease than ALL of those who have HIV, Heart Disease or Stroke.2
How do people “get” a rare disease?
80% of rare diseases have identified genetic origins while others are the result of bacterial or viral infections, allergies and environmental causes or are degenerative and proliferative.2
How many diseases are defined as rare?
There are at least 7,000 rare diseases—and they’re very diverse in nature, making them difficult to quickly (and accurately) diagnose. What’s more, 95% of rare diseases are without an FDA approved treatment or therapy.2
What are some examples of rare diseases?
How can I show my support?
Visit the National Organization for Rare Disorderslink opens in a new window to learn how to take action locally. You can donate money or time through participation in an educational or running event.
1 CDC Foundation.link opens in a new window
2 RareDiseaseDay.us.link opens in a new window
3 Mitoaction.org.link opens in a new window
4 Boston Children's Hospital.link opens in a new window
5 Rarediseases.org.link opens in a new window