Our Latest News

July 24, 2022

3rd International XLH Symposium

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...

By Admin OGConference, News, Research
February 25, 2022

XLH UK adult care webinar #2

Please join Associate Prof Kassim Javaid and Oliver Gardiner on Wednesday 2nd March 2022 at 8pm-9pm to give a key updates on adult access to burosumab. We will be covering:Update on NICEUpdate on...

By Admin OGNews, Webinar
February 14, 2022

XLH UK adult care webinar #1

Please join Associate Prof Kassim Javaid and Oliver Gardiner on Wednesday 16th February 2022 at 8pm-9pm to give a key updates on adult access to burosumab. We will be covering:Medicine review process and where...

By Admin OGNews, Webinar
October 23, 2021

International XLH Awareness Day

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...

By Admin OGPublication, Treatment
August 18, 2021

XLH at the Paralympic Games, Tokyo 2020

We are very excited to support Paralympian XLH’er Jennyfer Parinos at this year’s games in Tokyo. Coverage for Table Tennis starts on Wednesday the 25th of August on Channel 4. Wishing...

By Admin OGNews
April 24, 2021

Status Update

Hi all, there have been lots of developments in the last 4 months that I am keen to share with you. Firstly, earlier in the year we joined NICE’s Scientific Advice committee to offer insights and advice on...

By Admin OGNews, Research
January 15, 2021

Call to all adults with XLH

NICE is currently deciding on who can get access to new treatments like burosumab in England and Wales. To do this, NICE needs more evidence for how XLH affects patients’ lives today. Because it is a...

By Admin OGCall to Action, Research
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