This webinar was organised to draw attention to the urgent challenges facing adults with XLH by sharing views from patient organisations, clinicians and researchers. We hope to provide information on the unmet needs of adults with XLH, and to give evidence on current and future approaches to treatment and research in adult care. Our stakeholders …
We are excited to have worked with Health Awareness on their 2020 Rare Diseases campaign. The campaign features exclusive content on XLH UK and the International XLH Alliance, discussing the impact of late diagnosis and the stigma often associated to our rare disease community. CLICK HERE TO READ THE CONTENT ONLINE. YOU CAN ALSO FIND …
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 …
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 …
Today we have launched the Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership
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.
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.
