2022 International XLH Awareness Day
The 2022 International XLH Awareness Campaign is Access Your Best Care.
This follows the development of the Clinical practice recommendations for the diagnosis and management of X-linked hypophosphataemia guidance in 2019.
This guidance is critical in the care and management of those with XLH. This inspired us to extrapolate 12 key recommendations from the guidance in an effort to make them accessible for all.
About 350 people took part in a recent international XLH survey for adults to better understand the current care provided to XLH’ers. This provided the International XLH Alliance with a unique perspective on the current standards and how they may differ from the clinical recommendations. The results of the survey formed the idea for this year’s campaign.
During the campaign, XLH patients were asked what it means to receive the best care and what you are able to do because of it. It is without doubt that the community have come together from around the world to show what the best care means to you. You van view the 2022 International XLH Awareness Day presentation by XLH Australia’s President Sandy Bevc below. #ShowYourBestCare #MyBestCareWithXLH #AccessYourBestCare