Online. Founded 1996. Volunteer organization offering support and information for individuals and families affected by X-linked hypophosphatemia (aka X-linked hypophosphatemic rickets, familial hypophosphatemic rickets or vitamin D resistant rickets). Also open to those affected by similar disorders including autosomal dominant hypophosphatemic rickets and tumor-induced osteomalacia. Open to interested professionals dedicated to understanding in terms of support, research and developing new treatments. Raises awareness, exchanges and disseminates information. Offers an online brochure and members listserv.
Write:
XLH Network
4562 Stoneledge Lane
c/o Joan Reed
Manlius, NY 13104
Website: http://www.xlhnetwork.org
E-mail: joan.reed@xlhnetwork.org
Verified: 9/30/2008
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