Today is International XLH Awareness Day!!! Earlier this year we surveyed 350 adults with XLH to look at the current care standards that we receive. Comparing the current care standards to the clinical recommendations for the care and management of XLH (Haffner D, et al. Nat Rev Nephrol 2019;15(7):435-455.) the alliance found clear areas for …
Trustee Sally Hatton on this brilliantly written article on how her challenges with XLH an often with other #rarediseases are sometimes not immediately obvious. The #IAmNumber17 campaign has been critical in providing a platform for the #patientvoice allowing those with rare diseases to be heard. You can read the article from here: https://iamnumber17.geneticalliance.org.uk/sallys-blog/ ?
We are excited to have worked with Health Awareness on their 2020 Rare Diseases campaign. The campaign features exclusive content on XLH UK and the International XLH Alliance, discussing the impact of late diagnosis and the stigma often associated to our rare disease community. CLICK HERE TO READ THE CONTENT ONLINE. YOU CAN ALSO FIND …
>> 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 …
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.
