Definition of rare disease

Taken from http://img.medscape.com/thumbnail_library/ih_140408_rare-diseases_800x600.jpg

Let me tell you, according to Rare Disease Europe (EURORDIS), 2014 rare disease is referred to as an orphan disease or any disease that affects a small percentage of the population. It is also defined as rare in Europe when it affects less than 1 in 2000 citizens. While in United States, it is proven by National Institutes of Health that rare disease is rare when it only affects fewer than 200,000 people which is equal to 1 in 10 Americans. You may refer the picture below.

Original from http://h-genetherapy.weebly.com/uploads/2/9/2/1/29212413/1590991_orig.jpg

Unfortunately, based on the picture above, as it is known as a rare disease, there is no such existing cure for the diseases. National Organization for Rare Diseases revealed that most of medicine that have been made to cure the rare disease are 95% no FDA (Food and Drug Administration) approved drug treatment. 

It was a sad truth that only 30% of children with a rare disease tend to have a short lifespan in which die before they reach the age of 5. As addition, 80% of rare diseases are originally because of genetics.

Taken from https://s-media-cache-ak0.pinimg.com/originals/4c/18/23/4c1823482c218aef4c296b08ddcf8de8.jpg

It is hard to believe, but that is the facts of rare disease. As human beings, we need to accept that we don't have any power to stop the disease if it was because of our genes. The best thing to do is to accept whatever happened to the baby. Maybe, there are hidden messages for everything that happened.

Oh wait!

In order to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives, the last day of February each year has been chosen as Rare Disease Day!

Taken from http://blog.booster.com/wp-content/uploads/2015/02/rdd-logo-2.gif

In addition, the day was launched in Europe in 2008 by EURORDIS, the official U.S sponsor. The campaign is now observed in more than 87 nations arounds the world and one of them is Spain, declared 2013 as the National Year for Rare Disease.

Want to join them and show the solidarity? Raise and joins hands for Rare Disease Day through social media:-

• Facebook [ https://www.facebook.com/rarediseaseday ]  
• Twitter [ https://twitter.com/rarediseaseday ] 
• Youtube [ https://www.youtube.com/user/rarediseaseday ] 
• Flickr [ https://www.flickr.com/photos/rarediseaseday ]
• Google+ [ https://plus.google.com/103351106528925184946/posts ]  

I leave you with Rare Disease Day 2015 video.

Till the next post.

Bye!