The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
911 Central Ave., #161
Albany, NY 12206
The XLH Network, Inc. is dedicated to providing support, networking, and educational services to XLH patients, friends, family members, clinical practitioners, and researchers. Established in 1996, the organization maintains a web site and a forum, as well as a presence on other social media platforms. Other services include online support, brochures and other information, and patient networking. A general brochure is available, along with a book of patient stories, Weak Bones, Strong Wills, and other assorted educational materials. X-linked hypophosphatemia or XLH (also known as familial hypophosphatemia, or, incorrectly, as Vitamin D-resistant rickets) is an extremely rare genetic disorder that causes the wasting of phosphorus, leading to problems with bone, tooth and muscle growth, development and function. The XLH Network, Inc. is an emerging non-profit organization, springing from an international voluntary organization whose members are affected by, or interested in, XLH and other related phosphate-wasting diseases, such as the autosomal hypophosphatemias and Tumor Induced Osteomalacia (TIO).
Please Note
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.
