X-Linked Hypophosphatemia (XLH) Patient on FDA Approval of Crysvita® (April 2018)

Rachael Jones, 38, talks about the challenges of living with a rare skeletal disorder called X-Linked Hypophosphatemia (XLH), how it has affected her family, and her excitement about the recent FDA approval (April 2018) of Crysvita® (burosumab-twza) a new treatment for XLH that is about to become available to patients.

Guest Bio: Rachael Jones is the Secretary of The XLH Network, Inc. Rachael was diagnosed at birth with X-Linked Hypophosphatemia (XLH), her two children also have the condition. Rachael was a school administrator and teacher for several years before moving to Colorado, where she works as an office administrator and a curriculum writer. Rachael enjoys writing and someday hopes to become a children’s author.

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