Each year on the last day in February, Rare Disease Day brings awareness and education about rare diseases and the suffering they cause.
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, and in the United States, the standard is 1 in 200,000. Driving home how infrequent some of these conditions are, the observance sometimes occurs on the rarest date of the year – February 29th. Even so, the day is more predictable than many rare diseases. They can be difficult to diagnose and even more difficult to understand. 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 sufferers, there are fewer voices to bring awareness to their needs for research, medical and financial support. As a result, their physical, social and oftentimes mental burdens add up.
Rare Disease Day brings those voices together to help lift some of those burdens and bring awareness to light.
HOW TO OBSERVE #RareDiseaseDayUSA
- Help raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.
- Learn more about a rare disease impacting someone you love.
- Find out how you can make a difference in their life.
- Donate to a rare disease organization to support research into cures and treatments.
- Use #RareDiseaseDayUSA to post on social media.
RARE DISEASE DAY HISTORY
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.
For more information see:
http://rarediseaseday.us/
and
https://www.rarediseaseday.org/