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News
April 17th
It's Meet a Member Wednesday, and this week we meet Jenna R!…
April 4th
This week we have a special edition of Meet A Member Wednesday! This week we’re meeting our XLH Network Executive Director, Rachael Jones! Rachael lives in Colorado Springs with her husband and 2 children, one girl (5 years old) and one boy (7 years old).…
March 8th
Families living with XLH are living in an exciting time where there are a variety of options to meet others going through similar experiences.It’s wonderful to have so many worthwhile opportunities, and also sometimes challenging to sort through all the a…
March 6th
It's Meet a Member Wednesday. Today, we meet Marina! Marina was born in Madrid, Spain and now lives in New Jersey with her husband. Marina has 2 daughters, both in college, and both who have XLH. She may only stand at 4’6” but her personality adds at leas…
February 27th
It's Meet a Member Wednesday and today we’re meeting Danaya B. Danaya lives in San Antonio, TX with her fiancé. She is a very talented makeup artist and coaches a local cheer and dance team. Danaya has never let XLH stop her from accomplishing her d…
January 23rd
It’s Meet a Member Wednesday! Our next awesome member for you to meet is Robert D! He was born in New Jersey and currently lives in Trucksville, PA. Robert was diagnosed with XLH at 6 years old through lab work. XLH runs on his mother’s side of the famil…
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…
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