Rare Disease Day
Rare Disease Day
Rare Disease Day is an annual event held on the last day of February to raise awareness in the public and key decision-makers about rare diseases and their impact on patients’ lives.
The Day was first held in 2008 and was launched by EURORDIS and its Council of National Alliances. The Day quickly spread from Europe to become a worldwide event and to date more than 1000 events have taken place throughout the world with a great deal of media coverage, reaching hundreds of thousands of people.
What is a rare disease?
A disease is classified as rare by different standards in different countries. Europe classify a disease as rare when it affect 1 in 2000 people. In the USA it gets the classification if less than 200,000 Americans are affected at a given time.
There are currently over 6000 known rare diseases, with 80% of these being identified as genetic in origin. The remaining 20% is the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases affect children.
Sadly, many rare disease are yet to be understood. Treatments are either completely unknown or still in the very early stages of study. Rare Disease Day originated not only to create greater awareness among the general public, but also generate interest and further studies in understanding these diseases and finding treatments and possible cures.
To read more about Rare Disease Day click here
To find out how you can assist contact the South African Rare Disease Society