Our Latest News

November 30, 2020

I Am Number Seventeen

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...

By Admin OGPublication
January 15, 2019

The RUDY Study

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...

By Admin OGResearch
December 5, 2018

Scottish Parliamentary Reception

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....

By Admin OGParliament
June 6, 2018

Westminster Parliamentary Reception

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...

By Admin OGNews, Parliament
June 1, 2018

ECTS 2018 report

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...

By Admin OGNews, Publication, Research