Monday, March 9, 2015

XLH Day registration & Rare Disease Day recap

Registration for the West Coast XLH Day (April 9-10) in Novato, California, is now open at Thanks again to Ultragenyx Pharmaceutical and Kyowa Hakkin Kirin Co., Ltd. for the generous educational grant that makes this event possible.

In other news, our Scientific Advisory Board chair, Carolyn M. Macica, PhD, worked with her students to hold a Rare Disease Day event at Quinnipiac University's Frank H. Netter MD School of Medicine.

The topic was "The transition: Becoming an adult with a rare disease." Activities included a one-woman play, lectures, panel discussions and a reception, as well as a screening of the "Growing Up With XLH" video (which, if you missed it, you can find embedded at, or you can see it on Youtube here:

As explained in the flyer for the event: "30 million Americans have a rare disorder. With today's medical advances, more of these individuals are making the transition from adolescence to adulthood, but with this comes new challenges."

You can see a picture of the panelists at our facebook page ( or read more about the event here:

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