Links
Other XLH Related Sites
- Database of PHEX mutations
- Yale Center for X-Linked Hypophosphatemia
- Swedish XLH patient support website
- XLH Research site developed by XLH Network member
- Phosphate Metabolism page at above site
- Phosphate wasting illustration
Genetics-related Websites
- Human Genome Project
- Your Genes, Your Choices Exploring the Issues Raised by Genetic Research
- Online Mendelian Inheritance in Man (OMIM) page on XLH
Genetic Testing
Bone Disorder Websites
Medical Information Websites
Rare Disorder Resource Websites
- Canadian Organization for Rare Disorders (CORD)
- National Organization for Rare Disorders (NORD)
- New Zealand Organization for Rare Disorders
- NIH Office of Rare Diseases
- NIH "Spotlight on Rare Diseases" newsletter
- Rare Bone Disease Patient Network
Advocacy Websites
- Adaptive Products for short people
- Children Living with Metabolic Disorders (CLIMB)
- Contact A Family (UK)
- DiagKNOWsis
- Genetic Alliance
- Genetic Alliance UK
- Health on the Net Foundation
- Irish Patients’ Association
- The Patient Advocate
Similar Disorders
- Autosomal Dominant Hypophosphotemic Rickets (ADHR)
- Hereditary Hypophosphotemic Rickets with HyperCalciuria (HHRH)
- Tumor-Induced Osteomalacia (TIO)
© 2011, 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 listing of XLH research is available. Please read our full disclaimer.
News
-
- XLH Network Survey
- The XLH Network is currently in a year-long process of working to grow our organization and better meet the needs of the XLH community. As part of our initiatives, we have designed a survey in hopes of getting feedback from our members. Your feedback…
-
- 2013 Rare Disease Day Symposium
- In February the 2013 Rare Disease Day Symposium was held in California at the Sanford-Burnham Medical Research Institute. This year's topic was "Calcification Disorders - from Hardened Arteries to Soft Bones". Amo…
-
- New National Institutes of Health Research Study
- NIH Research Study: Open-label Dose-titration Study of the Tolerability and Efficacy of Cinacalcet to Treat Fibroblast Growth Factor 23 (FGF23)-mediated HypophosphatemiaPrincipal Investigator: Dr. Rachel Gafni, MDSponsoring Institute: Craniofacial and Ske…
-
- Scientific Advisory Board member wins award at ASBMR
- Michael Econs, XLH Network Scientific Advisory Board Member (SAB), was awarded the Frederic C. Bartter Award for outstanding clinical investigation in disorders of bone and mineral metabolism at the American Society for Bone and Mineral Research…
Stay Connected
| We comply with the HONcode standard for trustworthy health information: verify here. |