Wednesday, May 13, 2015

Ultragenyx Patient Day

A report from Network President Becky Mock on last month's Ultragenyx Patient Day:

Ultragenyx hosted their second annual Patient Day on Saturday April 11, 2015 in sunny Novato, California. Approximately 68 XLHers and their family members joined other rare disease groups and Ultragenyx employees to celebrate the challenges and sacrifices that rare diseases patients make every day. The event was lots of fun with wonderful food and drinks, clowns, a video game truck, bouncy houses for the kids and a wall mural for self expression. 

Ultragenyx CEO, Dr. Emil Kakkis, and four individuals affected by rare diseases, including our own President, Becky Mock, made presentations about their particular disease. The Ultragenyx tradition of naming conference rooms for people affected by rare conditions was carried on at Patient Day with one of the conference rooms being dedicated to Becky, in honor of all those affected by XLH. 

A final highlight of the day was a special performance by the 70’s rock band, Three Dog Night, including their hits Old Fashioned Love Song, One, a new powerful song called Prayer of the Children, and of course, Joy to the World!

XLH Network members enjoyed the festivities and appreciated our selection for the special honor of a conference room named for all those affected with XLH.

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