A Rare Opportunity
February 29th is a rare day. We only see it once every four years. So it's the perfect day to observe Rare Disease Day.
All around the world, there will be events and projects introduced to increase awareness of diseases that don't always make the news, that may not have a huge marketing organization. You might not realize that the following are considered "rare" :
* Cystic Fibrosis
* Huntington's Disease
* Gauchers Disease
* Spina Bifida
* Ushers Syndrome
and my "favorite" one, Retinitis Pigmentosa (RP)
Did you know:
According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting around 30 million Americans (about 1 in 10 people). Also, less than 5% of these diseases have any type of treatment options and none of the 7,000 have a cure. Yet.One in 10 people in the United States suffers with a rare disease. That makes it seem not so rare, doesn't it? It also makes you realize that you probably know a half dozen folks dealing with a rare disease!
"Solidarity" is the 2012 theme and it focuses on the importance and the need for collaboration as well as mutual support in the field of rare diseases.
In solidarity with me, a member of the rare-disease-club, check out this site or go to this site and click on the Raise Your Hand Campaign button. Each click = a $1.00 donation by Lundbeck Pharmaceuticals that goes toward research for rare diseases. (They're contributing up to $10,000 so click away!)
Happy Leap Day everyone. Please take a leap of faith and help out the millions of Americans who are hoping for treatment options and cures. Like me.
Happy Leap Day everyone. Please take a leap of faith and help out the millions of Americans who are hoping for treatment options and cures. Like me.
