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June 3, 2017

I was excited when I woke to discover that Sheila Black had an opinion piece about living with X-Linked Hypophosphatemia (XLH) published in the New York Times this past week. My ten-year old daughter, Sanders, has what is considered to be a spontaneous case of XLH (mea...

August 28, 2015

Last year at this time I was sobbing as I typed a Facebook message explaining to friends, family, and cyberacquaintances that my daughter had been kicked out of a clinical trial for a new therapy to treat patients with x-linked hypophosphatemia. This summer, we learned...

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