A rare disease is defined differently in different parts of the world. In Europe, a rare disease is one that affects fewer than one in 2,000 people while in the United States the standard is 1 in 200,000. While a majority of the conditions are genetic in origin, still others are the result of infections, environmental or degenerative factors.
Often people with rare diseases face a multi-faceted uphill battle; with few suffers, there are fewer voices to bring awareness to their needs for research, medical and financial support or their physical, social and often times mental burdens.
Rare Disease Day brings those voices together to help lift some of those burdens and bring awareness to light.
HOW TO OBSERVE
The goal of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and the impact that they have on patients’ lives.
First observed in Europe in 2008, Rare Disease Day was established by Eurordis, (the European Rare Disease Organization). In 2009, NORD was asked by EURORDIS to sponsor Rare Disease Day in the United States. NORD accepted and 2014 celebrates the 6th annual RARE DISEASE DAY USA.
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