Rare Disease Day 2019 is February 28. This day of awareness first began 11 years ago in 2008, a leap year. The first Rare Disease Day was celebrated on February 29th, chosen because the day itself is rare as it only occurs every four years. Since its inception in Europe in 2008, Rare Disease Day has been celebrated every year on the last day of February.
Did you know?
- 1 in 20 people will be affected by a rare disease.
- 80% of rare diseases have identified genetic origins.
- The other 20% are caused by bacterial or viral infections, allergies, or environmental causes, and are degenerative and proliferative (in other words, very progressive).
- There are no cures for many rare disease and many others go undiagnosed or misdiagnosed.
- Misdiagnosis of rare diseases is due in large part to relatively common symptoms that mask the true nature of the patient’s condition.
- Over 6,000 rare diseases are characterized by a broad diversity of disorders and variable symptoms that not only differ from disease to disease but from person to person, meaning two people can have the same disease but experience different symptoms.
- Misdiagnoses lead to delayed treatment and, more often than not, a decline in the patient’s quality of life.
Why we celebrate
The most common problems faced by people with rare diseases are 1) lack of scientific knowledge and quality information and 2) little or no access to treatment of their disease. The best way to combat these issues is by bringing awareness of these diseases to decision makers and researchers who can help with the study and treatment advancement of these conditions.
We celebrate because as medical professionals, increasing our knowledge about rare diseases helps us treat our patients better and because anyone can be affected by a rare disease at any point in their lifetime. We celebrate because half of those affected by a rare disease are children and bringing awareness leads to a brighter future for them. We celebrate because you might be the one affected by a rare disease and we want to see you get the best care and treatment possible.
How can you celebrate and bring awareness for Rare Disease Day 2019? Check out this link from rarediseaseday.org to learn more.