XLH Network Vice President named Co-Chair of Rare Bone Disease Patient Network.

The Rare Bone Disease Patient Network, (RBDPN) a coalition of rare bone disease organizations formed under the auspices of the United States Bone and Joint Decade (USBJD) has named as incoming Co-Chairs of the Network for 2009-2010, Jack Kelly, President of the Lymphangiomatosis & Gorham's Disease Alliance, and Joanne Joseph, Vice President of the XLH Network. In addition to the Lymphangiomatosis & Gorham's Disease Alliance and the XLH Network, members of the RBDPN include: Fibrous Dysplasia Foundation, International Fibrodysplasia Ossificans Progressiva Association, International Osteopetrosis Association, Melorheostosis Association, MHE Research Foundation, Osteogenesis Imperfecta Foundation, and the Paget Foundation. The RBDPN's mission is to share information, expertise and resources, in a collaborative effort, to increase awareness, understanding, and research of rare bone disorders.

Last modified Jun 17, 2009

XLH is also known as X-Linked Hypophosphatemia (sometimes also spelled as hypophosphataemia), X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) Rickets and even Genetic Rickets. Its notable characteristics are bowed legs, short stature, poor teeth formation causing spontaneous dental abscesses, and low blood phosphorus levels.

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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 of the F-HYPDRR group, a mailing list for The XLH Network Inc. A complete web-site bibliography is available. Please read our full disclaimer.