News
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 …
January 31st
The theme for this year's worldwide Rare Disease Day is "Research Brings Hope to People Living with a Rare Disease." With significant research being conducted in relation to our own raredisease, we are all living examples of what this theme can mean to a …
January 26th
Mark your calendar: XLH Day 2017 will be held on October 7 (Columbus Day weekend) at Quinnipiac University's Frank Netter MD School of Medicine in North Haven, CT., with early-bird events on October 6. We'll have both educational and networking activities…
January 24th
Every year, Ultragenyx Pharmaceutical invites patients with certain rare diseases, including XLH and the related phosphate-wasting disorders, to their annual patient day in Novato, California, for food, games, refreshments and live music.This year's event…
January 19th
It's easy to fall into hopelessness and the feeling that there's nothing you can do to improve either your own XLH experience or anyone else's.That's not true, though. There are several things you can do right now:1. Keep yourself informed about the lates…

Top of Page

© 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


We comply with the HONcode standard for trustworthy health information: verify here.

Site provided by Vibrant Creative