Wednesday, September 13, 2017

Last chance to register for XLH Day

Registration for XLH Day closes this coming Sunday, and you won't want to miss it! Register now at

We'll be making some big announcements during XLH Day, with opportunities for you to make your voice heard in the medical and regulatory communities about the needs of XLHers and their families. We'll also be launching our book, Weak Bones, Strong Wills, the Stories of XLH, so attendees can be among the first to get a copy! Some of the contributors to the book will be attending, so you can even get it autographed if you wish.

We've already got more people registered than for any previous XLH Day, and more educational sessions are scheduled than ever before. The morning workshops cover physical therapy, dental issues, education plans, genetic counseling and othopedic foot care. The afternoon will be more focused on new treatment possibilities and a general Q&A session where you'll be able to ask the experts general questions about XLH.

Don't think it will be all work and no play, making XLHers dull! We've incorporated some fun events, like a game to test your knowledge of XLH, and we've built in lots of time for you to get to know other members of the XLH community on Friday and Saturday evenings. There will also be additional social opportunities on Sunday morning during the 5K walk/run event.

Most of the Network's board and staff will be at the event, and we hope to meet as many members of  the XLH community as possible on October 6-8. See you then!

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