News
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…
February 21st
What will you be doing on Rare Disease Day? There are activities all around the world. Find one near you: http://www.rarediseaseday.org/events/worldThis year's theme is of particular interest to XLHers: "Research brings hope to patients living with r…
February 16th
Quick reminder that Monday, February 20th, is the deadline to apply for a scholarship to the Patient Day sponsored by Ultragenyx Pharmaceutical in Novato, California. Don't wait until the last minute if you want to attend!Information here: https://digital…
February 14th
We all know that living with a rare disorder has its challenges. Many of them are physical or emotional, but there can also be significant financial challenges.The current, basic standard of care for patients with XLH consists of two prescriptions, one fo…
February 8th
We are pleased to announce that Carol LaFleur, an experienced nonprofit professional, most recently as the Executive Director of the Northeast Kidney Foundation, has taken on the role of the first ever Executive Director of The XLH Network, Inc.We could n…
February 2nd
There's just a little over a week left until the online survey about XLHers' experiences with hip or knee replacement will close (Feb. 10th). If you've been meaning to do it, now's the time! And note that you CAN participate in this survey even if you're …

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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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