Tag: public awareness

A total of 23 posts are filed under public awareness
Lift For Life: Gamecock Football Team to Help Teammate, Others with Pelizaeus Merzbacher
COLUMBIA – A rare disease is one that affects less than 200,000 Americans at any given time. Pelizaeus Merzbacher is one of the… Continue Reading
May is Williams Syndrome Awareness Month!
In 2010, the Williams Syndrome Association designated the first full week in May as “Williams Syndrome Awareness Week.” In the years… Continue Reading
The Fight to be on Top – The Physical and Mental Challenge Against Rare Disease
I get asked all the time why I am so passionate about RARE Disease.  I get asked even more why I have volunteered for the last 8 years for… Continue Reading
February 29, 2012 – A Celebration of Unity
The Month of February During the month of February,  much of the American population will be celebrating historical events, special… Continue Reading
Relapsing Polychondritis – My Chances of Winning The Lottery Are Better
I am a 43 year old woman with Relapsing Polychondritis. 1 in 3.5 Million people are diagnosed with this disease. My favorite saying is, “I… Continue Reading
RARE Disease Lobby Day – February 28 – Washington, DC
RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and… Continue Reading
Shakes and Stones — Life with Cystinuria and CIDP
Hi, my name is Andy. I was born in Watford in the UK back in 1975.  In 1994, I moved to Australia to attend University.  This is also the… Continue Reading