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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.


XLH Network Inc.


Address

911 Central Ave., #161
Albany, NY 12206


Description

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).

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