The 52 people who attended our Family Day on 21st May were kind enough to bring the sunshine with them, thank you! From as far afield as Manchester, London and even Belfast, XLHers and their families came to Engineers’ House, Clifton, Bristol, to share their experiences and friendship. From Dr Roy’s informative morning session to …
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 formed and the children’s facepainting was a …
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 …
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 needs of adults with XLH, and to give evidence on current and future approaches to treatment and research in adult care. Our stakeholders …
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.
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.
