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February 28th has been designated as Rare Disease Day, a day where patient organizations around the world unite to promote awareness of the challenges, hopes and needs of those living with rare diseases. For 2014, the focus is on caregiving, and the global theme is “Join Together for Better Care.”

As an advocacy organization supporting a rare and aggressive type of cancer, we should take advantage of the global Rare Disease Day umbrella and share our passion to find the means to make rhabdo a universally survivable disease.

Rare Disease Day is sponsored in the US by NORD (National Organization for Rare Disorders, We have applied for organizational membership and have every reason to expect that we will be accepted.