Why a Sports Physical May Trigger a Doctor to Think About a Rare Diagnosis

Marfan syndrome is a genetic disorder that affects…

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
A Life with PKU (Phenylketonuria)
Kevin Alexander is a normal guy.  He likes to play electric guitar, video games, and write music.  He enjoys listening to movie sound… Continue Reading
Illinois School Promotes Rare Disease Day With Dollar Denim Day
Having a rare disease makes us different. Making an impact in the minds of children by helping them understand what it means to be different… Continue Reading
Multiple Hereditary Exostoses – Meet The Thompson Family
My family is engulfed with Multiple Hereditary Exostoses (MHE).  The disease has affected my grandfather, mother, uncle, cousins, brother,… Continue Reading
Fighting ABCA3 Surfactant Deficiency Since Day One – Meet Brayden
My name is Amanda Havens and my son Brayden Matheu Pearson was born with a rare genetic disease.  He was born with ABCA3 surfactant… Continue Reading
Looking for a way to participate in Rare Disease Day Events? Don’t miss these Rare Disease Day events in DC!   Monday, February 27, 2012… 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