Last year, several of our members went to Ultragenyx Pharmaceutical's Patient Day, designed to honor patients (children and adults) with rare diseases, including XLH. If you'd like to go this year, it will be held on May 21, 2016 in Novato, California.
Please note that this event is NOT the same as XLH Day. This one is hosted by Ultragenyx, not the XLH Network, but we expect that there will be several XLH patients there, and so will the Network's new president Bill Coogan,.
The event is free and travel scholarships may be available, although registration hasn't begun yet. We'll let you know when we hear that registration and the scholarship application process have opened.