The story so far…
The Clinical practice recommendations for the diagnosis and management of X-linked hypophosphataemia (1) guidance was published in 2019. This guidance is critial in the care and management of those with XLH. This insirpired us to extrapolate 12 key recommnedations from the guidance in an effort to make them accessible for all.
This led us to create the International XLH survey for adults to better understand the current care provided to XLH’ers from around the world. An outstanding 350 adults gave their time to complete the survey which provided us with a unique perspective on the current standards and how they may differ from the clinical recommendations.
The data from the survey and the recommendations inspired from the guidance came nicely together to form his year’s campaign: Access Your Best Care. We are incredibly excited to be working with a talented illustrator and data analysts who have been key in developing the recommendations and analysis into a project that will be memorable and educational.
(1) Haffner, D., Emma, F., Eastwood, D.M. et al. Clinical practice recommendations for the diagnosis and management of X-linked hypophosphataemia. Nat Rev Nephrol 15, 435–455 (2019). https://doi.org/10.1038/s41581-019-0152-5
Illustrations by @cwhitworthdesign