Jun 24, 2019
[vc_row][vc_column][cs_headings style=”simple” text=”To celebrate the first ever XLH awareness day on June 23rd, the International XLH Alliance, met in Salzburg, Austria to create an action plan which ensures that all patients with the disease and...
Jan 18, 2019
Final Recommendation We are absolutely thrilled to announce this morning that burosumab has been APPROVED for routine use on our NHS for children from 1 years up to young adults aged 16/17 years. This news completely changes the landscape for the estimated 250...
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...
Dec 5, 2018
[vc_row][vc_column][cs_headings style=”simple” text=”On 5th December 2018, Shona Robison MSP welcomed the Brittle Bone Society to Holyrood to top off an exciting year of celebrations which have taken place throughout the 50th Anniversary year of the...
