Wednesday, July 12, 2017

XLH Day Registration is Open!

XLH Day Registration is open at We think you'll be as excited as we are with everything we've got planned, from panel discussions to interactive discussions, a children's program, and even a picnic dinner at a local state park. You can see the list of speakers and the preliminary agenda here:

Before registering, please read the information about hotel accommodations here  We don't have a grant to cover hotel costs for everyone this year, so the stipends will be granted on the basis of need. We understand the financial burdens of living with a rare disease, and we will do our best to accommodate everyone who could not attend without the financial assistance. For your own planning purposes and for ours, we encourage anyone who does need the help to apply for the stipend as early as possible in the registration period by contacting our Executive Director, Carol LaFleur at

If you know anyone else with an XLHer in the family, please make sure they know about XLH Day. We don't want anyone to miss out on such a great experience!

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