News
April 26th
The Ultragenyx Patient Day was held this past weekend at the company's Novato location.  Rare disease patients from across the country gathered for a day of networking, family activities and the chance to connect and share with others. Fifty-fiv…
April 19th
Back in the 1950s, when it wasn't known that X-rays could be harmful (and the machines emitted much more radiation than they do today), it wasn't unusual for XLHers to have full-body, head-to-toe sets of X-rays done at regular intervals.Fortunately, today…
April 12th
If you're going to see a new doctor, or perhaps you have a child who's transitioning from a pediatric endocrinologist to an adult endocrinologist, then you'll want to have your (or the child's) medical records. Even if you were diligent about getting copi…
April 5th
The severity of symptoms experienced by XLHers varies greatly from patient to patient. Some are active into their old age, but others have mobility challenges beginning generally somewhere between early- and mid-adulthood. Depending on the person's choice…
March 29th
Researchers at Oregon State University, in association with the National Organization for Rare Disorders (NORD) are undertaking the first large-scale study about the information and psychosocial support needs of people living with rare disorders.Obvi…
March 22nd
XLH Day will be held on the Columbus Day weekend, a wonderful time of year to experience what Connecticut has to offer. To help you with your planning, we've asked Board Member Joyce Inman to share her experiences as someone who has traveled frequently to…
March 15th
XLH has been viewed as a childhood disorder until recently, so there's been little thought given to transitioning patients from their pediatric health care provider to a specialist experienced with the challenges for adults with XLH. As we're learning mor…
March 8th
The Collaborative on Health Reform and Independent Living (CHRIL) is a 5-year research project funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to study how health reforms affect working-age adu…
March 1st
The National Organization for Rare Disorders (NORD) is once again working with the Hole in the Wall Gang Camp in Ashford, Connecticut, to host an event just for children with rare diseases and their families. This year, it will be held on June 1-4, and it…
February 23rd
Patients with X-Linked Hypophosphatemia (XLH) are living the theme of this year's Rare Disease Day: "Research brings hope to people living with a rare disease."Virtually all of the estimated 7,000 identified rare diseases have no truly effective treatment…

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© 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


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