If you missed the 2014 Midwest XLH Day (or went, but wish you'd taken notes during the speakers' presentations), we now have the videos available at our very own Youtube channel, so you can get the valuable information from home, at your convenience. You can find the videos here (after you click on the "videos" tab): https://www.youtube.com/channel/UCOCxS6CV6NeNxoFFivOyNpg
We'll be adding to the collection with videos from the 2015 West Coast XLH Day and future events, so make sure to subscribe to get notifications of new content. For now, we have five videos from Midwest XLH Day: Opening remarks by President Becky Mock; Carolyn M. Macica, PhD., on XLH Beyond the Adolescent Years; Erik A. Imel, M.D., on XLH and FGF23; Michael J. Econs, M.D., with a brief history of XLH; and closing remarks by President Becky Mock. You'll also find a playlist with links to other relevant videos.
And just in case the videos inspire you to contribute to medical understanding of XLH, the Burden of Illness study is still accepting responses. Also, we recently received word that the Burden of Illness study has been translated into Portuguese (for residents of Brazil), and Spanish (with three different versions, depending on whether you reside in the U.S., Mexico or Latin America), so if you were unable to participate before because of the language barrier, now you can participate.
Here's the link (and use the dropdown menu to choose a language and country): https://www.amihealthy.com/custom/ultragenyx/burdenofillness/burdenofillnesshome.aspx?SITE=XLHNETWORK