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 Sally Hatton represented XLH UK in the room. International XLH Alliance …
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 were representatives from XLH UK and several UK medical specialists in attendance. Hosted by …
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 …
NICE is currently deciding on who can get access to new treatments like burosumab in England and Wales. To do this, NICE needs more evidence for how XLH affects patients’ lives today. Because it is a rare disease, there is a big gap in our understanding. One way you can help with this is by …
>> Link to view paper online << Delighted to be sharing a new publication that XLH UK and XLH Network was involved in. A lot of you here were instrumental in participating in the study and I’d like to thank you all for your input ! The study identified the top 10 research priorities most relevant to …
To celebrate the first ever XLH awareness day on June 23rd, the International XLH Alliance, met in Salzburg, Austria to create an action plan which ensures that all patients with the disease and related bone disorders receive the best available treatment.
Did you know that RUDY Study data was included in the recent NICE evaluation in understanding XLH in children? We would like to highlight how important projects like RUDY is and the role it plays when researchers work with the data to better understand disease impact. If you’ve not already done so, I’ll ask that you to sign up to RUDY, and if you already have, that you are logging back in to keep on top of your surveys. This is going to be key when NICE evaluate future treatments for adult care.
Today we have launched the Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership
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.
