Jan 14, 2025
Research shows impact of XLH on quality of life XLH UK have collaborated with Triangulate Health to scientifically verify the research evidence regarding the impact of XLH on the lives of XLH patients and those of their families. Titled ‘Exploring Perspectives...
Jan 15, 2019
Did you know that RUDY Study data was included in the recent NICE evaluation in understanding XLH in children? We would like to highlight how important projects like RUDY is and the role it plays when researchers work with the data to better understand disease impact....
Dec 21, 2018
Today we have launched the Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership (PSP). I’m very happy to share the outcomes from the James Lind Alliance Rare Musculoskeletal Diseases PSP. Many of you gave your time to submit questions and to...
Jan 18, 2017
Aged between 13-17, 18-25, 26+? Do you live in Finland, Ireland, France or the UK? And fall into these age categories 13-17, 18-25, 26+? Then, please read on because your input will influence the care for adults across Europe. This is the now the time to focus on...