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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.

a/k/a: XLHNI

Address

911 Central Ave., #161
Albany, NY 12206

Fax

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800 Number

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TDD

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Email Address

Jim.Walker@XLHNetwork.org

Website

http://www.xlhnetwork.org

The XLH Network 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 an associated email group forum. Other services include online support, brochures and other information, and patient networking. There are approximately 500 subscribers to the mailing list. A general brochure is available in Portuguese and Spanish. X-linked hypophosphatemia or XLH (also known as X-linked hypophosphatemic rickets, familial hypophosphatemia, familial hypophosphatemic rickets and Vitamin D-resistant rickets) is an extremely rare genetic disorder in which a child's bones do not grow and develop normally, even if normal amounts of Vitamin D are present in the diet. 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 associated diseases.

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