Oct 4, 2022
We were delighted to welcome so many of you to the Family Day on Sunday 2nd October in Manchester, especially to people who braved all the rail disruption to get there! We hope you found it was a lovely day where helpful information was shared, new friendships were...
Sep 15, 2022
Latest news regarding NICE’s Topic Selection of using burosumab in XLH adults (September 2022) Background You may already be aware that XLH UK have been working hard to represent patient views to NICE since March 2021. We have also liaised closely with select expert...
Jul 27, 2022
The day before the 3rd International XLH Symposium took place in Dublin, we had a meeting of XLH patient groups from around the world, hosted by International XLH Alliance. Oliver Gardiner led several sessions as co-chair of XLH Alliance and trustees Sarah Mitson and...
Jul 24, 2022
The 3rd International XLH Symposium took place on the 1st July at University College, Dublin. The final session of the day was ‘Global Health Disparities and Access to Care’, where Oliver Gardiner presented results from the IXLHA International Patient Survey. There...
Feb 25, 2022
Please join Associate Prof Kassim Javaid and Oliver Gardiner on Wednesday 2nd March 2022 at 8pm-9pm to give a key updates on adult access to burosumab. We will be covering:Update on NICEUpdate on Pathway- Topic Selection Survey- Writing Group- Next StepsPatient Case...
Feb 14, 2022
Please join Associate Prof Kassim Javaid and Oliver Gardiner on Wednesday 16th February 2022 at 8pm-9pm to give a key updates on adult access to burosumab. We will be covering:Medicine review process and where we are nowNew Clinical GuidelinesQuality of Life...
