International XLH Awareness 2021

October 23

It is with a great pleasure to announce our International XLH Awareness Campaign 2021.

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 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.

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 this year’s campaign: Access Your Best Care. We are incredibly excited to be working with a talented illustrator (Claire Whitworth) and data analysts who have been key in developing the recommendations and analysis into a project that will be memorable and educational.

A stream of our Instagram feed is available below
XLH_2021_campaign_Title

International XLH Awareness 2021
October 23rd

It is with a great pleasure to announce our International XLH Awareness Campaign 2021.

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 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.

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 this year’s campaign: Access Your Best Care. We are incredibly excited to be working with a talented illustrator (Claire Whitworth) and data analysts who have been key in developing the recommendations and analysis into a project that has been memorable and educational.

A stream of our Instagram feed is available below
XLH_2021_campaign_Title
During the campaign, we asked you 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. #ShowYourBestCare #MyBestCareWithXLH #AccessYourBestCare

The below patient stories speak volumes “receiving the best care allows me to be in less pain, and it means that I can do more with my family”, “My best care means I can enjoy my passions for professional dog training and swimming.”, “My best care is continuing to enjoy nature and life.”, “For me, the best care means managing everyday life without limitations and having a lot of fun”, “I have more energy”, “The best care for us means that we can do things together as a family.”, “For me, the best care is that I can play and dance without restrictions and have less pain thanks to timely medical care.”, “I’ve picked up a new hobby”, “My best care is to be playful, spontaneous and very happy!”, “I feel more relaxed”, “I can exercise”, “I sleep better at night”, “I can concentrate more at work”…

To help people with XLH access their best care, we compiled the 12 illustrations into an accessible info-graphic. We hope that people with XLH will be able to refer to this and use the graphic as a tool to ensure they are better advocates for themselves. 

Thank you to all that have been involved in this campaign. 

Available to download our information graphic

Click the image to download.

(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 15435–455 (2019). https://doi.org/10.1038/s41581-019-0152-5

Illustrations by @cwhitworthdesign

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