Burden of Illness Study data

The first official presentation of the XLH Burden of Illness Study's data happened this week at the 2015 ENDO Meeting of the Endocrine Society in San Diego, CA.

It comes as no surprise to XLH patients that the study confirmed that "XLH can lead to significant long-term morbidity in the form of pain, stiffness, functional limitations, and fractures," but it has long been a widespread belief among the medical community (outside the few specialists in XLH) that the condition was primarily one of childhood, without long-term consequences.

For anyone who hasn't already completed the study, it has been extended, and you can contribute your information here: https://www.amihealthy.com/custom/ultragenyx/burdenofillness/burdenofillnesshome.aspx?SITE=XLHNETWORK

For more on the Study's data, see the full press release here: http://globenewswire.com/news-release/2015/03/09/713519/10123739/en/Ultragenyx-Announces-Presentation-of-Disease-Burden-Data-in-Adult-Patients-With-X-Linked-Hypophosphatemia.html