News
September 21st
The Global Genes Rare Patient Advocacy Summit is happening in California tomorrow and Friday (September 22-23). You can register for the livestream here: https://globalgenes.org/2016livestream/ If you can't watch them live, they'll be available after…
September 14th
Last week, there was a symposium on XLH in Paris for medical researchers and clinicians to learn and share their experiences. It was organized jointly by the RVRH-XLH patients' association and the Reference Center for Rare Disorders of the Calcium and Pho…
September 6th
Too often, rare-disorder patients stop seeking treatment, because they're overwhelmed with all the medical appointments and they've come to believe that nothing can be done about their condition.While it's understandable, it's also risky. Many XLHers have…
August 30th
Access to good treatment for rare diseases can be a challenge anywhere in the world, but XLH patients are resilient and persistent. You can read about a couple of families who are coping with the challenges of XLH in Peru here: http://www.…
August 23rd
Global Genes (globalgenes.org) has a really outstanding webinar (video) at its site with suggestions for working with your health care team about your (or your child's) rare disease.Three particularly interesting points were:1) it's useful to write out a …
August 16th
Even as we're recovering from an amazing XLH Day in Houston, Texas (more on that next week), we're gearing up to represent the XLH community at other events this fall.First up is the American Society for Bone and Mineral Research (ASBMR) annual conference…
August 9th
The Network's board is getting ready for XLH Day, where we're hoping to hear the stories of everyone there. That's only a small portion of our membership, though, so we still want to hear your stories for our book, Weak Bones, Strong Wills, The Stories of…
August 2nd
A new research study at Quinnipiac University, led by our Scientific Advisory Board chair, Carolyn Macica, PhD, is looking into XLH patients' experience with joint replacement surgery. Please note that anyone currently in a clinical trial is NOT eligible …
July 26th
Even as we're putting the final touches on the program for this year's XLH Day in Houston, Texas, we're already thinking about the next event in 2017.Picking a location starts by finding a keynote speaker. As we're all aware, there aren't that many expert…
July 19th
It's that time of year -- outfitting the kids for back to school. That used to mean trips to the mall, but these days, a good bit of the shopping is done online through Amazon and other digital retailers.If that's how you shop, please consider using the A…
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The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers to a mailing list and/or members of a forum for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer.
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