Monday, April 15, 2013

I love someone who is RARE. Do you?

Did you know that there are over 7,000 Rare Diseases and new ones are discovered all the time. 

RARE is Everywhere and I want to spread the word about supporting RARE because even though alone we are RARE together we are STRONG and sometimes I just need the stregnth of others.  You may not even realize that you know someone who is RARE, but I bet you do.

Rare and genetic diseases affect 1 in 10 Americans, 30 million people in the United States, and 300 million people globally.  Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes.  The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases on of the mst deadly and debilitating for children worldwide.

While at Lobby Day we were shown the Global Genes Project video that is below.  It does a wonderful job of showing how important staying connected is and how you really aren't ALONE.

When it is your child that you watch suvering day after day you want to stand up and shout at the world, hey listen to me.  Well today I am shouting..if you are listening and want to help spread the word contact me.  Maybe you can help figure out what is wrong with my child and if not mine maybe someone elses.

No comments: