Resources and links
Being diagnosed with XLH can be difficult and sometimes, there’s not a lot of information about. Below is a list of useful links to patient resources:
- XLH in adults
Patient stories - How XLH impacts teeth
- XLH signs and symptoms
- Diagnosing kids with XLH
- XLH–A disease for life
- CRYSVITA consumer medicine information summary
- Australian product information sheet for CRYSVITA
Links to rare disease support networks
The following useful links provide additional information and support:
- Rare Voices Australia
- XLH Network (USA)
- International XLH Alliance
- Genetic and Rare Disease Network (Australia)
- Genetic Alliance Australia
Research links
There is no cure for XLH, but there are treatments. Below is a selection of research articles conducted by medical practitioners across the globe.
- The role of parathyroid hormone in the pathogenesis of skeletal disease in X-linked hypophosphatemic rickets (XLH)
- Phosphate, PTH, and FGF23 as mediators of the rachitic growth plate
- The structure, function, and pharmacologic inhibition of FGF23
- XLH Across the Life-Course: A Qualitative Study
- X-linked Hypophosphatemia (XLH): Burosumab Significantly Improved Rickets and Standing Height Z-Score Compared with Conventional Therapy in Children with XLH