As part of our Call to Action, members of the XLH community have been talking to the press about the draft guidance from NICE to reject burosumab for adult patients.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 can read the online article from BBC Wales featuring Claire Lewis and her family here.
We spoke to Sally Hatton, who is a trustee of XLH UK, before her live interview on BBC Northwest Tonight. She was determined to get the message across about her experience of fractures and how burosumab might help. The interview was clear and compelling and will amplify our message strongly – great job, Sally!
You can watch the interview here.