2/19/2013

Families of children with a rare genetic disorder called Sanfilippo syndrome are joining the chorus of voices asking researchers to open access to data on rare diseases. Three family foundations have offered to raise $550,000 to pay for a national natural-history study on the condition that researchers would make data available to other qualified researchers. The families hope that sharing data would cut down on the number of studies on the disease and spare families the fatigue and difficulty involved in participating in multiple studies.

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