Research Paper on XLH Quality of Life

Research Paper on XLH Quality of Life

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...
NHS guidelines for adults on burosumab

NHS guidelines for adults on burosumab

Resources are available if you are starting on burosumab The NHS has now published guidelines so that specialists can prescribe burosumab to UK adults with a diagnosis of XLH. You can watch the recording of a webinar that XLH UK ran, to provide more information about...
NICE decision gives UK-wide access to burosumab

NICE decision gives UK-wide access to burosumab

Breaking News! XLH UK is delighted to report that adults living with XLH in England, Wales and Northern Ireland will now have access to burosumab, the first available treatment to tackle the underlying cause of XLH. The decision by NICE ensures equal access to...
Scotland confirms burosumab for children

Scotland confirms burosumab for children

Scotland confirms burosumab for children XLH UK is pleased to to report that the Scottish Medicines Consortium (SMC) has confirmed access to burosumab (marketed as Crysvita) for the treatment of X-linked hypophosphataemia (XLH) in children and adolescents aged 1 to 17...
XLH UK campaign on BBC News

XLH UK campaign on BBC News

As part of our Call to Action, members of the XLH community have been talking to the press about the draft guidance from NICE to reject burosumab for adult patients. We are thrilled to see that our message has been highlighted by both BBC Wales and BBC NorthWest! You...
NICE guidance rejects burosumab for adults

NICE guidance rejects burosumab for adults

NICE has released draft guidance on the Health Technology Assessment of burosumab for adults in England. Their evaluation and XLH UK’s response is explained in the press release below, along with a five step Call to Action! for all members of the XLH community. ...