Rare disease awareness

Chances are, before you met Evan or stumbled across this blog, you had never heard of MSUD.  We hadn't either, and it's not surprising, as it's what is considered a rare disease.  Current statistics estimated that only 1 in 180,000 babies are born with MSUD.

Living with a rare disease is difficult.  There is very little understanding, both from the general public and the medical community.  Imagine having to explain your disorder and it's effects several times a day, every day, for the rest of your life.

Global Genes, through the RARE project, is working to bring awareness to rare diseases.  They have declared February 29th World Rare Disease Day. 


This is 30 days from now, and the number 30 is significant - 30% of children with rare disease die by their 5th birthday.

More statistics:

An estimated 350 million people are affected by rare diseases worldwide.
1 in 10 Americans is affected by rare disease.  That's over 30 million people. 30 million Americans is more than the total number of people living worldwide with cancer (28 million according to the Livestrong Foundation).
There are more than 7000 rare diseases with some affecting less than 100 people.  75% of rare diseases affect children.
Almost 80% of rare diseases are genetic in origin.
These rare diseases are chronic, life threatening, and FATAL.  Only 5% of these diseases have any kind of treatment.
Over 50% of rare diseases have no foundations, advocacy groups, or community support.

Surprising statistics, aren't they?

But you can take action!

Help Unite 1 Million For Rare on the Global Genes Project Facebook page so that we can increase awareness to the rare disease community.
Wear That You Care (using jeans to call attention to genes that can cause rare disease) on World Rare Disease Day and encourage others to do so too.  Include your schools, sports teams, places of worship, friends, family, and coworkers!  Share your photos and Facebook and tag Global Genes Project. 
Donate a bracelet to the 7000 Bracelets for Hope campaign and bring hope to a child/family living with rare diseases.
Are you living with rare?  Sign up to receive one of the 7000 Bracelets via the Global Genes website and also join the R.A.R.E network.

I also ask that you support the other bloggers who are blogging today to raise awareness of World Rare Disease.