Custom Search

Monday, February 29, 2016

Rare Disease Day


The last day of the month of February is a day that looks at rare disease. What makes up a rare disease is something that takes on different meanings in different parts of the world. A rare disease in Europe affects fewer than one in 2,000 people yet in the U.S. the standard is a bit different affecting 1 in 200,000. Most rare diseases are genetic in origin, still others are the result of infections, environmental or degenerative factors.
The goal of Rare Disease Day is to raise awareness among the general public and decision makers. Since rare diseases do not affect as many as other diseases do I am sure that there may be many that are not aware they even exist. Rare Disease Day helps bring to light the impact that these diseases have on patients lives. The holiday was first observed in Europe in 2008. It was the European Rare Disease Organization that shared the holiday. The holiday was first celebrated in the U.S. only 2 years ago in 2014. 
The theme for 2016 Rare Disease Day is to celebrate the "patients voice" You can get involved in Rare Disease Day by:
  • Telling others your story. If you love someone or are someone who has a rare disease then share your story with others. You never know it may help someone that hears you talk
  • Take a selfie with a sign made celebrating Rare Disease Day and holding your hands high
  • Join in an event, there are several planned, where Rare Disease Day is celebrated
  • Follow Rare Disease Day on Social Media Twitter , Facebook, 

No comments:

Post a Comment

I love comments so if you have a minute leave me your thoughts on the above post