Wednesday, January 29, 2014

President's Review of 2013

Network President, Becky Mock, is here to remind us of last year's accomplishments: 

The fall of 2013 was a particularly exciting and busy season for the XLH Network, Inc.

In mid-September, we teamed up with seven other rare bone disease groups to form the Rare Bone Disease Advocacy Alliance to meet with members of Congress to discuss the challenges of life with a rare bone disease and to advocate for greater public awareness and increased federal funding for research. I met with some of the North Carolina caucus, including Representatives David Price and Robert Pittenger, and the Legislative Assistant from Senator Kay Hagan's office.

The following weekend was XLH Day, held at Quinnipiac University in North Haven, Connecticut. People traveled from all over North America, as far as Texas, California and Canada, to meet fellow XLHers and hear from medical providers with substantial experience treating XLH patients. If you weren't able to be there in person, you can still benefit from the lectures, which were videotaped and are available at and

Finally, in October, the majority of the Board was able to gather at the annual meeting of the American Society for Bone and Mineral Research in Baltimore, Maryland to network and discuss XLH with the leading experts in bone disease.. You may have already seen the news, that a member of our Scientific Advisory Board, Thomas Carpenter, M.D., won the 2013 Most Outstanding Clinical Abstract Award at this event.

We're working hard to make this year even more productive. I'll be back in a few weeks to share our plans for 2014.

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