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XLH Network to Present at ASBMR 2003 Conference By: Larry WingerDate: Sept 15-23, 2003 (Note from Webmaster - XLH Network in the following report refers to the name given The XLH Network Inc. prior to incorporation March 2, 2005.) Many members will know that we of the XLH Network are presenting a poster at this year's American Society for Bone & Mineral Research (ASBMR) this week in Minneapolis, Minnesota, describing some of the work behind the scenes in terms of information dissemination. Joan and I are going as co-authors of the poster, thanks especially to Elaine and Scott's support (who as coordinators are also co-authors), and in addition Patsy Collins and Tove Haugen are attending to help represent the XLH Network. We are going to be a friendly little contingent there! The major point of our presentation is that although in the past many people affected by XLH were unaware of just what having this metabolic disorder might mean to themselves and their families, today our information distribution network can enfranchise and empower people with the best information about XLH. We exemplify this point by describing the height poll we held a year or so ago, as well as the more recent medication poll. Basically, we hope we are reaching people with information that is both useful and needed. The rules of the ASBMR conference mean we can't show anyone our poster until an hour after its session finishes on the conference floor, so look out for it on the xlhnetwork.org website after Scott posts it sometime late Sunday afternoon! Although we're presenting this poster because we believe it is important to describe our work so that doctors and clinics are aware of this patient support network, our prime motivation for going to these conferences, of course, is to acquire information about current research. Although we try to go with our eyes and ears wide open, gleaning as much information as we can, it helps to be specifically focused as well, so that we can try to ferret out specific bits of information. It struck us that people reading this might have specific questions that they would like us to try to pose, or general topics or concepts that they would like us to try to clarify. So in these last few days before we actually report from the conference floor (travelling on Thursday, conference is Friday through Tuesday), perhaps members would wish to send us questions directly, that they would like to see addressed in our report. You might wish to ask these questions in the semi-public space of the F-HYPDRR list (and that's great!), but also you may wish to ask them privately of us attendees, and we'll be happy to carry all questions burning in our ears to the conference. Email either the F-HYPDRR list or us attendees: Larry@xlhnetwork.org, Joan@xlhnetwork, patsycollins@surfglobal.net, HaugenRN@aol.com and we'll feel we are better prepared with worldwide questions, and we hope everyone will feel that they are also represented at the conference. We're not guaranteeing answers, of course, but a question not raised is a question with less hope of any return. All best wishes Larry
Links Link to Poster XLH Network Presented at conference in Acrobat file format. File also available in Microsoft Powerpoint format.
XLH Network members may also access reports from the field describing
the conference: Last modified Aug 8, 2007 XLH is also known as X-Linked Hypophosphatemia (sometimes also spelled as hypophosphataemia), X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) Rickets and even Genetic Rickets. Its notable characteristics are bowed legs, short stature, poor teeth formation causing spontaneous dental abscesses, and low blood phosphorus levels.
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