>> 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.
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.
This weekend, our team attended the UK Genetic Leadership Symposium organised by Genetic Disorders UK in partnership with Global Genes. This was a fantastic event where we heard from patient groups, researchers and clinicians all working towards the shared goal of improved support and treatment for those affected by genetic disorders.
This is the now the time to focus on the possibilities of new treatment for adults. You’ll all remember how important the ‘burden of illness’ studies can be because the healthcare assessors and decision makers across Europe need to understand what the quality of life is currently like for adults and their families living with XLH.