There's been so much happening lately, and some topics have been piling up, so here's some short snippets of information to get us all caught up.
First, there's an online survey for research at the University of Rochester (New York) on "Understanding and overcoming obstacles to participation in clinical research for patients with rare diseases." If you'd like to share your thoughts on the issue, you can complete the survey here: https://redcap.urmc.rochester.edu/redcap/surveys/?s=PE9AWFM48K
For new members who haven't heard about it yet, if you'd like to share your thoughts and experiences on research that's more specific to XLH, you can do the Burden of Illness survey here: https://www.amihealthy.com/custom/ultragenyx/burdenofillness/burdenofillnesshome.aspx?SITE=XLHNETWORK Note that it's now available in a variety of languages: English, French, Portuguese and several versions of Spanish.
And finally, a reminder that the Global Genes Patient Advocacy Summit is happening tomorrow and Friday. If you'd like to watch the livestream to better understand what you can do to advocate for yourself, and what the Network's board is doing on your behalf, you can register here: https://globalgenes.org/2015summit/ Our president, Becky Mock, will be attending the summit, and we hope to have some pictures at our official Facebook page, facebook.com/xlhnetwork
One of the speakers is Pat Furlong, the CEO of Parent Project Muscular Dystrophy (Thursday, 9 a.m. California time, noon Eastern time), and I (Gin Jones) can tell you she's amazingly inspiring. She spoke at a workshop I attended last week, and I'm still thinking about some of the things she said, like how patient advocates need to find innovative ways to "quantify the patients'/caretakers' tears," putting the suffering into a format that researchers and funders and the FDA can understand.