While we're preoccupied with the final arrangements for XLH Day, we thought you might be interested in a TED talk by Sharon Terry on how she came to embrace citizen science, despite having no background in medicine. She is President and CEO of Genetic Alliance and the founding CEO of a research advocacy organization for a genetic condition that affects her two adult children.
You can watch it here: http://www.tedmed.com/talks/show?id=619693
If Sharon's talk inspires you too, consider contacting our Executive Director, Carol LaFleur, at info@XLHNetwork.org to see how you too can get involved in advocating for the XLH community.
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