Wednesday, March 4, 2015

West Coast XLH Day Registration

Registration for West Coast XLH Day (April 9-10) begins on Monday. We hope you will join us in Novato, California, to meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your own or your child’s symptoms.

Due to a generous educational grant from Ultragenyx Pharmaceutical and Kyowa Hakko Kirin Co., Ltd, the XLH Network is offering a casual mixer as people arrive at the Best Western Plus, Novato, California, on Thursday, April 9th, and educational and social programs for both adults and children of all ages on Friday, April 10th at the Unity in Marin campus, 600 Palm Drive, Novato, California. 

The grant also enables the Network to reimburse up to thirty families for at least a portion of the hotel costs. The first thirty families to register will be eligible for reimbursement of the base cost for up to two nights at the hotel ($139.00 each plus tax). Instructions for claiming the reimbursement will be included in your registration packet when you check in on the day of the event. 

Guest speakers will include pediatric nephrologist Anthony A. Portale, M.D.,  and Network Scientific Advisory Board member, Carolyn M. Macica, PhD. 

Registration will begin March 9, 2015, at, and end on March 30, 2015. Please do not try to register before Monday, or your information may be lost. Advance registration is required for admission to the event. You must be a Network member to register, but joining is free. Just go to, click on "become a member," and follow the links. Please note that it may take 24-48 hours for your membership to be activated. 

We look forward to greeting old friends and making new acquaintances!

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