Registration (and scholarship applications) is open now for Ultragenyx Pharmaceutical's Patient Day, designed to honor patients (children and adults) with rare diseases, including XLH. The event 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, but in limited quantities, so apply soon if you're interested.
XLHers who are in Phase 3 of the KRN23 trials may NOT attend the event. All others may, including those who are/were in Phase 2 KRN23 trials.
For more information, check out http://events.r20.constantcontact.com/register/event?oeidk=a07ebync7o9b249d3e0&llr=orxhodsab