News
May 24th
Ultragenyx Pharmaceutical sponsored its annual Patient Day in Novato, California this past weekend for patients with the rare medical conditions that the company is working on treatments for, including XLH. It was a chance for patients and their families …
May 17th
Today, our social media coordinator, Gin Jones, is here to talk about Weak Bones, Strong Will, the Stories of XLH, our planned book on the XLH experience: My mother's uncle was a great oral storyteller. Even when I was a self-absorbed teenager, I lov…
May 13th
A trial of KRN23 in infants/toddlers (age 1 to less than 5 years old) is recruiting patients now.You can read more about it, and get the current contact information here:https://clinicaltrials.gov/ct2/show/NCT02750618?term=xlh&rank=12At present, the o…
May 11th
If you don't already know about the clinical trials of KRN23, there are two Phase 3 trials going on now for adults, and we expect that there will be a Phase 3 pediatric trial beginning sometime this year. Check back for updates here, or in our discussion …
May 9th
If you know of XLH-related events happening around the world, please let us know by emailing: XLHstories at gmail dot com. Meanwhile, we've got some more news from our board member, Oliver Gardiner, and what's happening in the UK. Oliver represe…
May 4th
Social media has been a boon for many patients with rare disorders, enabling them to share their experiences with people who truly understand what they're going through.It's not without its down sides, though. Misinformation can be passed around, sensitiv…
May 2nd
In France, XLH is known as RVRH (comparable to the vitamin-D resistant rickets terminology in English), and there is a French-speaking group known as the "Association pour les personnnes atteintes de rachitisme vitamino-resistant hypophosphatemique." You …
April 27th
We're embarking on a new project to collect the stories of people living with XLH in a book tentatively titled, Weak Bones, Strong Wills, the Stories of XLH.One of the things we hear so often, from patients, caregivers and the general public is "I never k…
April 25th
Mary Ruppe, M.D., has agreed to be our keynote speaker at the Texas XLH Day on August 13, 2016 in Houston. We've heard great things about her from her XLH patients, and you can read more about her here: http://health.usnews.com/doctors/mary-ruppe-440…
April 19th
The XLH Network, Inc. has been awarded a grant to establish a Registry and Natural History Study in collaboration with the National Organization for Rare Disorders and the U.S. Food and Drug Administration. You can read the official NORD press release her…

Top of Page

© 2011, The XLH Network Inc.
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

Last modified Mar 28, 2016


We comply with the HONcode standard for trustworthy health information: verify here.

Site provided by Vibrant Creative