Status Update

Hi all, there have been lots of developments in the last 4 months that I am keen to share with you.

Firstly, earlier in the year we joined NICE’s Scientific Advice committee to offer insights and advice on experiences and challenges that adults with XLH are faced with. I am proud that the feedback we gave was an honest reflection of the complexities surrounding XLH.

It has now been used to generate specific evidence to ultimately improve understandings of XLH when new treatments are considered.
We also took part in a meeting with the Head of Highly Specialised Services for NHS England and the former Chief Inspector of Hospitals as well as a virtual room full of all your favourite doctors.

The aim of the meeting was to set out a plan on building a new Rare Bone Strategy that NHS England may look to adopt. Improving the care of adults with XLH is a priority among the rare bone group and I spoke a great deal on misdiagnosis, the lack of understanding in community care, inconsistent pathways, poor transition of care, burden of care coordination and social and economic challenges.

The presentation was well received, and we have had subsequent meetings to shape the strategy. We are looking forward to sharing more as and when we can.
Enjoy your long weekend!

Status Update