Wednesday, February 18, 2015

West Coast XLH Day

Please save the date so you can join us for West Coast XLH Day on April 9-10, 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, the XLH Network will be offering a casual mixer as people arrive at the Best Western Plus, Novato, California, on Thursday, April 9th, and then educational and social programs for both adults and children of all ages on Friday, April 10th at the Unity in Marin campus in Novato, CA. The grant also enables the Network to reimburse up to thirty families for at least a portion of their hotel costs, the details of which will be provided when registration opens.

Guest speakers will include Anthony A. Portale, M.D.,  and Network Scientific Advisory Board member, Carolyn Macica, PhD. More program details will be announced shortly before registration opens.

Registration will begin March 9, 2015, at, and end on March 30, 2015. Please do not try to register until there is an official announcement that the site is ready or your information may be lost, and advance registration is required for admission to the event. You must be a Network member to attend, 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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