Wednesday, June 1, 2016

Deep in the BONES of Texas!

It's just over two months to XLH Day (August 13, Houston, Texas) -- have you made your transportation plans yet?

As always, we've got a great keynote speaker -- this year, it's Mary Ruppe, M.D. -- who's putting together a great collection of medical care providers with experience treating XLH patients. There will also be representatives from Ultragenyx Pharmaceutical, and fun, educational activities for children of all ages.

This year's venue will be the the Shriners' Hospitals for Children in Houston. As in previous years, we've made arrangements for special pricing at hotels convenient to the venue for the night before and the night after the event.

Also as we've been able to do for the last two events, we'll be offering reimbursement for one night's hotel stay per family for the first thirty people to register. To be eligible, you'll need to have an active account at discussion platform, so if you haven't joined yet, you can do it now for free at so you'll be ready when registration opens (not yet!).

But that's not all! We're offering some extras this year. For starters, we'll have t-shirts with a design specifically for this year's event. You can see it at our official facebook page: (And thanks to Marah for providing the initial inspiration for the design!)

In addition to the usual informal meet-and-greet on Friday evening,  we're adding another informal gathering on Saturday evening for anyone who wants to stick around for a bit longer before saying goodbye to new friends.

Also new this year: we expect that (almost) the entire board of directors will be in attendance, so you can meet us, ask us questions and let us know how we've helped you and how we can do more for you and your family.

We expect to have registration open on or about June 8th (don't try to register yet, or your information will be lost!). Keep an eye here or at the discussion platform or the official facebook page for updates.

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