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News
January 21st
We have finalized the dates and locations of our XLH Network regional patient meetups for 2019! We will be calling these regional meetups "XLH Community Connections."The purpose of XLH Community Connections is to connect you with doctors, patients, …
January 16th
Here is the first post in our “Meet a Member Wednesday” series. Meet Shay W! She was born and raised in St. Louis, MO and was diagnosed with XLH at 18 months old, and is a spontaneous case. She is married with two beautiful children; ages 3 and 5 months o…
December 20th
It's not often that something life-changing happens to an entire global community, but that can be true for XLHers of all ages in 2019. Next year may see more approvals, all around the world, of the first-ever treatment for XLH (and the related hypophosph…
September 5th
We are absolutely thrilled to announce this morning that burosumab has been APPROVED for routine use on the UK’s NHS for children from 1 years old up to young adults aged 16/17 years.This news completely changes the landscape for the estimated 250 childre…
August 17th
The FDA recently hosted a Patient Focused Drug Development meeting on Chronic Pain, and the public is invited to provide comments about the information presented, as well as their own experiences with pain. The XLH Network, Inc., provided a full statement…
July 30th
We are kicking off our 2nd annual Virtual Walk/Run for THE XLH NETWORK, INC as a way to countdown to Baltimore! Our virtual walk/run will take place from July 30–October 7th.Spread the word and raise awareness by creating a peer to peer page and encouragi…
July 4th
There are only a few days left to speak up about the benefits of burosumab before the regulatory agency makes its final decision, possibly denying this life-changing treatment to patients in the UK. To comment, you must register at NICE using this link.&n…
July 3rd
The Pre-Event survey for the Symposium will help us to have even a bigger impact on our audience members, which include the medical community, researchers and insurers. Make sure your voice is heard! It will only take a few minutes. Click here to start:ht…
June 27th
We are excited to announce that Rachael Jones, a fellow XLH Network member, has agreed to assume the position of Executive Director of the XLH Network effective with the resignation of Carol Lafleur at the end of this month. Rachael brings a wealth of non…
June 18th
The regulating authority in England is set to decide, incorrectly we believe, that even though burosumab is safe and effective, it will not be made available to patients in the UK for financial reasons. There is a short window of opportunity (just until J…
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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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