By: The XLH Network Inc. Coordinators

Benefits of Membership

• Its Free! The organization is run by volunteers throughout the world and is the only organization dedicated to XLH.
• The XLH Network Inc. is composed of a caring community of hundreds of XLH patients, families, and medical professionals who come together to share questions and concerns with one another.
• The most up-to-date information on XLH is discussed on our Members Web Space available only to members.
• The F-HYPDRR mailing list is distributed to members world-wide via the Internet. It is a moderated subscription list, acting as a semi-public forum in which The XLH Network Inc. members can share information and their experiences. The coordinators of The XLH Network Inc. endeavor to include medical professionals and researchers who are particularly interested in XLH, as well as XLH patients and their families. A searchable F-HYPDRR e-mail archive, has been maintained since the beginning of the F-HYPDRR mailing list in 1996. This large body of information is available to members.
• We are a comprehensive support network and can often help find medical professionals in your local area that have experience in treating XLH.
• Many of the very best clinical and research professionals in the XLH field are members of The XLH Network Inc. An extensive bibliography of medical research regarding XLH is available to our members on our Members Web Space.
• The XLH Network Inc. representatives attend medical conferences and share the latest research with membership. The XLH Network Inc. provides its membership with up-to-date information on ongoing research and studies involving XLH.
• We are intimately familiar with contemporary research into the biology and published research of XLH.
• We work with medical professionals to help identify best clinical practice and management of XLH.
• The XLH Network Inc. members host several meetings a year throughout the United States and abroad. In addition to providing an opportunity to meet others with XLH, sometimes seminars are offered by medical professionals on XLH, its treatment, progression, diagnosis, and the latest medical advances.
• We are members of a collection of umbrella organizations committed to genetic disease support. Additionally, The XLH Network Inc.is actively involved in providing its perspective to appropriate governmental agencies and bodies.
• A complete search ability of our web site is available to members.

Thanks to your help, The XLH Network Inc. has been growing.

• Plans are in the works to put together a regular newsletter available to The XLH Network Inc. membership.
• We are in the final stages of becoming a Nonprofit Organization to better facilitate research, education and advocacy for XLH.

Join The XLH Network Inc.

Disclaimer
Privacy Policy

Last modified Aug 8, 2007

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.

© 2002-2007, The XLH Network Inc.
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.