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...
Publication
This webinar was organised to draw attention to the urgent challenges facing adults with XLH by sharing views from patient organisations, clinicians and researchers. We hope to provide information on the unmet...
Conference, News
Authors: Raja Padidela 1 , Moira S Cheung 2 , Vrinda Saraff 3 , and Poonam Dharmaraj 4 1 Royal Manchester Children’s Hospital and Faculty of Biology, Medicine and Health, University of Manchester,...
Publication, Research, Treatment
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...
News, Publication
>> 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...
Publication, Research
Children and adolescents with XLH will now be able to access burosumab on the NHS in Scotland >> Link to download Press Release << London, England, February 10, 2020. XLH UK, a nonprofit...
News, Treatment
>> Link to Survey << We want to hear from people who have experience of living with inheritable hypophosphatemia’s about what it is like to live with the condition and their experience of...
Call to Action, News
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...
Conference, Research
Final Recommendation We are absolutely thrilled to announce this morning that burosumab has been APPROVED for routine use on our NHS for children from 1 years up to young adults aged 16/17 years. This news...
News, 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...
Research
Today we have launched the Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership...
News, Publication, Research
On 5th December 2018, Shona Robison MSP welcomed the Brittle Bone Society to Holyrood to top off an exciting year of celebrations which have taken place throughout the 50th Anniversary year of the Charity....
Parliament
On Wednesday 6th June, XLH UK trustees were invited to attend a parliamentary reception at Westminster to celebrate the Brittle Bone Society 50th anniversary. The event was sponsored by Lord Kevin Shinkwin and...
News, Parliament
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...
News, Publication, Research
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,...
Conference, Research
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...
Call to Action, Research