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Feb 10

Scottish Medicines Consortium enables access to burosumab for treating X-linked hypophosphataemia

Children and adolescents with XLH will now be able to access burosumab on the NHS in Scotland >> Link to download Press Release << London, England, February 10, 2020. XLH UK, a nonprofit trust representing patients with XLH in the United Kingdom and Ireland, is looking forward to a brighter future now that the Scottish Medicines Consortium …

by Admin OG
Link to Survey
Jan 18

NICE u-turn approves first therapy for children with XLH

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 children living with XLH in the UK. Burosumab will be the first …

by Admin OG
Dec 21

James Lind Alliance Rare Musculoskeletal Diseases PSP

Today we have launched the Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership

by Admin OG
Jun 6

Westminster Parliamentary Reception

On Wednesday 6th June, XLH UK trustees were invited to attend a parliamentary reception at Westminster to celebrate the Brittle Bone Society 50th anniversary. The event was sponsored by Lord Kevin Shinkwin and hosted by the CEO of the BBS Patricia Osborne and Vice Chairman John Phillips, and saw the presentation of the Brittle Bone Society Excellence Awards for 2018.

by Admin OG
Jun 1

ECTS 2018 report

XLH UK attended the European Calcified Tissue Society congress (ECTS) in Valencia, Spain. We were also fortunate to attend the first Rare Bone Group meeting alongside the congress to meet and work with other rare bone groups. Please do have a look at the report published from their event since we made page 3.

by Admin OG