The XLH Network - Your support network for
The mission of the XLH Network is to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure. (To see more information on our mission and vision click here.)
The mission of the XLH Network is to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.
(To see more information on our mission and vision click here.)It usually first shows up as bowed legs in a child and rickets may be diagnosed, but it is often mistaken for nutritional rickets. However,it resists traditional Vitamin D and sunshine therapy, and vitamin D levels are usually normal. These girls are twins--one having the mutation causing XLH and the other not. The twin on the left demonstrates the classic signs of bowed legs and slowed growth of a child with XLH, but not all will have the same degree of symptoms.
X-Linked Hypophosphatemia is not often seen, so not a lot of information is available. It's a condition that is usually diagnosed in children, but being unusual it is often misdiagnosed or in milder cases may not be focused on by the physician or family.
Specific tests are needed to know what is causing the problem. XLH is rare, so most doctors will never see it. If you or your child has been diagnosed with XLH, or if you think your child might have it, you need to find a doctor and facility experienced in recognizing it and dealing with it. It’s important that it’s treated properly, and that takes someone with XLH experience
Welcome to the XLH Network. If you’re dealing with XLH – also known as X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) and even Genetic Rickets – you know the fear of not knowing what to do or where to turn.
We know that fear. We’ve been there. We started this network because our own loved ones have it. We’re here to help. Please let us.
© 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 of the F-HYPDRR group, a mailing list for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer.
- XLH Network Survey
- The XLH Network is currently in a year-long process of working to grow our organization and better meet the needs of the XLH community. As part of our initiatives, we have designed a survey in hopes of getting feedback from our members. Your feedback…
- 2013 Rare Disease Day Symposium
- In February the 2013 Rare Disease Day Symposium was held in California at the Sanford-Burnham Medical Research Institute. This year's topic was "Calcification Disorders - from Hardened Arteries to Soft Bones". Amo…
- New National Institutes of Health Research Study
- NIH Research Study: Open-label Dose-titration Study of the Tolerability and Efficacy of Cinacalcet to Treat Fibroblast Growth Factor 23 (FGF23)-mediated HypophosphatemiaPrincipal Investigator: Dr. Rachel Gafni, MDSponsoring Institute: Craniofacial and Ske…
- Scientific Advisory Board member wins award at ASBMR
- Michael Econs, XLH Network Scientific Advisory Board Member (SAB), was awarded the Frederic C. Bartter Award for outstanding clinical investigation in disorders of bone and mineral metabolism at the American Society for Bone and Mineral Research…