Wednesday, November 11, 2015

A variety of videos

Some of the videos of the Global Genes Rare Patient Advocacy Summit are available now, for those who couldn't attend in person and would like to know more about the work that patient advocates and patient support groups are doing in the complicated worlds of research, drug development, drug approval and the funding for all this work.

At our own Youtube channel, you can see the XLH Day videos from 2014 (and we're getting close to having the ones from 2015 ready for upload). In addition, we have a "playlist" with links to the "Growing Up With XLH" video and the ones from the 2013 XLH Day and Quinnipiac. Thanks to a volunteer (thank you, Ann Lewis!), we recently compiled an index to the Quinnipiac XLH Day videos (in the first comment for each of the two videos), so if you don't have time to watch the whole thing in one sitting, you can find the sections that might be of particular interest to you. The indexes even have hyperlinks to take you to the exact spot in the video! Alternatively, you can see an abbreviated index of the two videos here, to get a general idea of what the topics are:

In related news, there's an interesting non-Youtube video (so we can't add it to our playlist) about an XLHer who underwent a relatively new orthopedic surgery technique (hexapod external fixator):

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