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International Patient Registry

The X-Linked Hypophosphatemic Rickets International Registry (HIC# 0907005408) seeks to register patients with a clinical diagnosis of XLH in order to:

  • Compile clinical data on XLH, including age of diagnosis, symptoms, treatment history, etc.,
  • Gain a greater understanding of the complex and varied profiles of patients with XLH,
  • Improve the global understanding of the disease,
  • Determine an accurate assessment of the incidence of XLH in the population worldwide.

In the future, the Registry hopes to serve as a resource for patients and families with XLH, as well as facilitate connections between clinicians, researchers and patients.

For more information or to join the Registry, please send a note to Yale Center for X-Linked Hypophosphatemia.