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 approximately 7,000 rare diseases. And it’s the rare disease that has sparked the South Carolina football team to rally and take action. […]

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 since, the number of awareness events for Williams Syndrome held annually has grown tremendously, and this year, Congressman Jim Moran will introduce a resolution […]

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 rare disease, without pay.  Individuals who have not encountered rare disease, or really thought about it […]

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 interest groups and campaigns.  Some of these include Black History,  American History, Children’s Dental Health, and American Heart Month.  Internationally recognized events in February include […]

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 couldn’t just win the lottery??”  I was diagnosed by my allergist who recognized my swollen ears, a hallmark of this […]

RARE Disease Lobby Day – February 28 – Washington, DC

RDLA is hosting an Advocates Luncheon & Conference Call on September 12, 2012.  RSVP is required for attendance.

RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease Week!  Join us and make sure Congress hears your voice! Lobby […]

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 same year my medical problems started with my first kidney stone a week before my nineteenth […]