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 XLHNetwork.org, or you can see it on Youtube here: https://www.youtube.com/watch?v=UNwWgig69-c)
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 (facebook.com/xlhnetork) or read more about the event here: http://hamdentimes.com/quinnipiac-university-mark-world-rare-disease-day-feb-27-program-transition-becoming-adult-rare-disease/5458/#more-5458