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X-Linked Hypophosphatemia
Is there support?
Elpha Green Cottage
Sparty Lea
Allendale
Hexham
NE47 9UT
Tel: 01434 685047
e-mail: info@xlhnetwork.org
Web: http://www.xlhnetwork.org
The Network was, established in 1996 as an Internet based worldwide support group. It also supports individuals and families with Autosomal Dominant Hypophosphatemic Rickets (ADHR). It offers support by telephone and letter to individuals and families who are not online and links families where possible. It has a wide range of information available, mainly on the website. The XLH Network has over 500 members worldwide, representing 41 countries, and from a continuing poll of the members, is confident that its contact base is approaching 1,000 people directly affected by XLH. The XLH Network Inc.is incorporated in the USA as a nonprofit organisation and is actively involved in understanding the basis of the bone and mineralisation disorder that links its members.
Group details last updated August 2007.
Inheritance patterns and prenatal diagnosis
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