Thursday, December 1, 2016

Thank you

Thanks to all the generous donors who participated in #GivingTuesday yesterday and chose the Network to receive the funds. We're already busy setting our budget for next year, looking for the best ways to put that money to good use (and to squeeze every penny's worth of value out of it by using volunteer services for most of our activities). 

If you have yet to make an end-of-year gift, we hope you will consider making a donation to the Network so that we can achieve all of our plans and goals in the upcoming years. https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

Thank you again for your generosity. Stay tuned for some exciting news in 2017 as the work we've done this year, thanks to previous years' donations, comes to fruition with an amazing XLH Day (October 6-7 in North Haven, CT), the launch of the Natural History Study, publication of new educational materials for children, and release of the book of XLH stories (which is still looking for stories; send them to xlhstories@gmail.com). 

We expect 2017 to be something of a breakthrough year, with advances in science, possible FDA approval of pediatric use of KRN23 and the ever-increasingly accepted role of patient groups' involvement with the medical research community. We hope you'll be here, sharing in the good news and supporting our work.

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