Save the date: TX XLH Day will be held on August 12-13, 2016 (get-together on Friday night and main events on Saturday) in Houston, TX. More details will follow as we have them, and will be announced on all our social media platforms.
Meanwhile, if you want to see what's been done in the past, we've added the West Coast XLH Day speakers' videos to the Network's Youtube channel: https://www.youtube.com/channel/UCOCxS6CV6NeNxoFFivOyNpg
The videos include presentations by: pediatric endocrinologist Anthony Portale, M.D.; our SAB chair Carolyn Macica, PhD.; Genetic Counseler Kimberly Barr, MS, LCGC; and a representative of Global Genes.
Don't forget that in addition to these videos and the ones from Midwest XLH Day that are directly available at our Youtube channel, our "Playlist" has links to other relevant videos, like the "Growing Up With XLH" video and the videos from XLH Day at Quinnipiac University.
Showing posts with label Youtube. Show all posts
Showing posts with label Youtube. Show all posts
Wednesday, February 3, 2016
Wednesday, September 23, 2015
Catching up
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.
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.
Thursday, November 7, 2013
XLH Day 2013
We are very excited to announce the completion and availability of the XLH Day panel I and Panel 2 videos from XLH Day 2013, held at Quinnipiac University. We would like to thank Quinnipiac University and the Academic Technology staff for providing the resources necessary to document this special day. We hope you find the material educational.
The URL's are:
Panel 1 : http://youtu.be/IIAtcMGaUVU
Panel 2: http://youtu.be/ay8LdZspmco
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