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 http://www.youtube.com/watch?v=IIAtcMGaUVU
and http://www.youtube.com/watch?v=ay8LdZspmco
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.
