The charity has five strategic objectives. Below we summarise how we have progressed against these objectives over the last three years: 2022-2025

Awareness & standards of care: as part of the Rare Bone Collaborative Network, we have been supporting the establishment of a new NHS Rare Disease Care Network (RDCN) of over 22 hospitals across the UK. Together we have developed a networked service model for care of adults with rare bone conditions in England.

Access to new treatments: We contributed evidence as the lead patient group to Health Technology Assessments for burosumab for adults with XLH, both in England and Wales and in Scotland. The charity welcomes the news that adults with XLH will now be able to access burosumab across the UK.

Information and support:  We have held Community Days in Manchester, Bristol and Birmingham with positive feedback. We produce a news digest – XLH UK Navigator – which reaches over half of the UK XLH population. We provide webinars to inform the community about new treatments on the NHS, and we have been building up peer-to-peer support programs for those that want to connect.

Research and evidence generation: We built evidence on Quality of Life for adults with XLH based on an extensive survey of UK patients which was presented to NICE as part of the ongoing Health Technology Assessments on access to burosumab. We have produced five patient stories which showcase different aspects of living with XLH. These were recognised at the prestigious MRS Qualitative Research Awards 2025 for their impact. 

High performing, sustainable organisation: XLH UK is a founding member of International XLH Alliance, where patient organisations from over 20 countries come together to learn from each other. Our charity has a clear strategic plan and regularly reviews its policies, risk management and fundraising plans to enable it to thrive into the future.

XLH UK has been active with the UK patient community since it was founded as a charitable trust on November 18th 2017. The trust was formed by Oliver Gardiner, Nicholas Papé and Amy Lee. The charity converted to a Charitable Incorporated Organisation (CIO) on 29th November, 2021.

XLH UK is a founding member of International XLH Alliance, a network of national patient groups for those with XLH around the world. Working together internationally with medical experts from multiple disciplines has accelerated research and knowledge transfer for all concerned. XLH UK historically supported IXLHA with accounting, IT and administration services, but the two charities are now legally and financially independent from each other.

2024 was a momentous year for XLH UK, as we led a vigorous campaign to collect evidence on the impact of burosumab in the adult population. This contributed to the NICE decision to make burosumab available to adults with XLH on the NHS, a decision that will lead to all four nations of the UK providing this life changing treatment.

XLH UK is a registered charity funded by public donations and grants. In the last three years we have received honoraria and grants from: The National Lottery Community Fund, NDORMS and Kyowa Kirin. 

Our values – accountability, integrity and transparency – underpin everything we do.

The XLH UK Board of Trustees are volunteers who are legally responsible for the organisation fulfilling its charitable objectives.  If you believe you have the time and interest to become a trustee, please contact the Chair in confidence at sarah@xlhuk.org 

The XLH UK Board is supported by a small team of contractors and volunteers, whom we would like to thank. If you are interested in volunteering, please click here.

XLH UK is lucky to have the support of some multi-disciplinary experts who are knowledgeable about XLH. They connect with other experts in UK and abroad, to shape necessary research and advise on how to optimise treatment and care pathways.