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XLH Featured at ASMBR Conference (Note from Webmaster - XLH Network in the following report refers to the name given The XLH Network Inc. prior to incorporation March 2, 2005.) PHOENIX, ARIZONA- Thank you so much for your kind wishes for our happening-as-we-speak adventure to the ASBMR (American Society for Bone and Mineral Research) Annual Meeting, this year in Phoenix. We are VERY, VERY excited about being able to be there. Profound thanks to Yves Sabbagh for reminding us long ago that this conference was in the works, Dr. Michael Econs, who helped get the ball rolling on our plans to attend, Colin Steeksma who kept it going, Joan Reed who has been working with me for weeks (months?) to accomplish everything we had hoped was possible, and to Larry Winger, who was not expected to attend, but came through at the last minute to rearrange his life so as to be able to join Joan and her husband Ron in representing us there. Everything has worked out well beyond our expectations. We have put a nice collection of materials together and they will be displayed in the conference's registration area, as well as at a special table, graciously provided by ASBMR just for us, outside the meeting room where a special Minisymposium on Genetic and Acquired Hypophosphatemic Disorders (of which XLH is the most common) is being held. This will bring information on XLH, as well as our group, to physicians and researchers who may not have heard about us before. We've also contacted many of the people connected with XLH research/treatment and hope to meet and talk with them in Phoenix. This, together with attending the presentations of the conference itself - including the exciting Minisymposium mentioned above - will bring us up to date on the latest developments in XLH research and treatment, as well as hopefully reveal new ways for our group to help in assisting the medical community pursue new knowledge on understanding the causes of, and developing effective treatments for, XLH. Stay tuned for exciting reports on ASBMR/Phoenix! Warm hellos, Elaine October 12, 2001 The Minisymposium on Genetic and Acquired Hypophosphatemic Disorders is happening NOW! Co-Chairs of this minisymposium are our own Dr. Michael Econs of Indiana University, and Harriet S. Tenenhouse of McGill University. Speakers and their topics are: Clinical Features of Hypophosphatemic Disorders The Role of Renal Phosphate Transporters in Phosphate Homeostasis PHEX, A Novel Endopeptidase Involved in Mineral Metabolism FGF23 and Its Role In Hypophosphatemic Disorders Joan, Ron, and Larry are there, hearing these talks and talking to all who will stop by our table outside the conference room. More detailed reports coming soon .... Elaine October 18, 2001 Hi all, Just a note to say that the XLH Network representatives are back from the big meeting in Phoenix, and pretty much exhausted, but safe, happy and really enthused about the science we learned about, and the contact/networking we did there. Although Joan and Ron Reed and I were physically there, we owe a great debt to Elaine too for the organising and garnering of material prior to the event. We're working now on reports from the conference, but they will probably come out in several sections, of which the following is some sort of an approximation: i. Possible new Vitamin D analogue, or other possible new therapeutics, imminently available for trials; this report will concentrate on medications under current pipeline development, as presented at the conference, with a view to considering how or whether we as a patient support network can help to expedite their development and assessment in the best possible way. ii. The basic biology of PHEX (that is, the gene that is mutated in XLH, and its resultant endopeptidase product), and its possible substrates. FGF23, the phosphaturic factor that is affected by the gene mutated in Autosomal Dominant Hypophosphatemic Rickets, was perhaps the predominant 'buzz' of the conference, but there are other stories out there too, which we need to consider as part of a total picture of the current field. These basic biological models will undoubtedly hold the key to a convincing therapeutic approach which may be just beyond a year or so down the road. iii. The continuing story of how a useful evaluation/study/analysis of XLH in an adult context can be developed, and our preliminary discussions at the conference. iv. The role of physical activity in terms of good bone health. v. Even newer biology and future perspectives for the horizon. vi. Contacts, networking, XLH Network display and photographs of the conferees. 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 spotaneous dental abscesses, and low blood phosphorus levels.
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