President Bill Coogan and Board member Gin Jones represented the Network and the XLH community at the annual conference of the American Society for Bone and Mineral Research in September.
Data on the clinical trials of KRN23, the antibody to FGF23, which causes phosphate wasting, were presented during the meeting, and you can read about it at Medscape: http://www.medscape.com/viewarticle/869124 or in the press releases from Ultragenyx Pharmaceutical: http://ir.ultragenyx.com/releasedetail.cfm?ReleaseID=989901 and http://ir.ultragenyx.com/releasedetail.cfm?ReleaseID=989786
Bill and Gin also met with some of the Scientific Advisory Board members, and attended the Rare Bone Disease event that included a presentation by Scientific Advisory Board member Suzanne Jan deBeur on XLH.
Dr. Karl Insogna spoke at another session on rare bone diseases, focusing on the symptoms and treatment of adults with XLH. He was particularly emphatic in warning clinicians about the problems with prescribing large amounts of phosphorus without adequate amounts of calcitriol/rocaltrol. He also recommended that patients stay active, particularly with non-weight-bearing exercises, like swimming and Tai Chi.
At our official facebook page, facebook.com/XLHNetwork , you can see pictures of the booth that was a joint effort by a group of rare bone disease organizations jointly known as the Rare Bone Disease Patient Network, and the poster that summarized some results from a recent study at Quinnipiac University's Frank Netter School of Medicine into XLHers' Gait, Mobility and Range of Motion.