XLH UK is the only registered charity which supports those with XLH and related disorders in the UK.
Our mission is to help those with XLH and their families through research, support and advocacy. We are here to listen, to inform and represent you as a community.
We are a small charity for a rare condition with a big heart!
The charity has five strategic objectives. Below we summarise how we progressed against these objectives in 2022.
Awareness & standards of care: we teamed up with International XLH Alliance, attending the medical symposium in Dublin and promoting the findings of the white paper on best standards of care.
Access to new treatments: We contributed as a lead patient group to Health Technology Assessments for burosumab for adults, both in England and Wales and in Scotland. The charity welcomes the recent news that adults with XLH will now be able to access burosumab in Scotland.
Information and support: We improved the information available on our website and consolidated our social media presence. We held a patient family day in Manchester in October 2022 which got positive feedback and engagement from a number of new volunteers. We produce a newsletter – XLH UK Navigator – which reaches over half of the UK XLH population.
Research and evidence generation: We commissioned a series of in-depth qualitative studies into the lived experience of XLH, leading to the creation of four compelling patient stories that cover the varied challenges of XLH. In addition, evidence presented to the Scottish Medical Consortium was based on an extensive survey of UK patients, designed in partnership with Metabolic Support UK.
High performing, sustainable organisation: XLH UK and International XLH Alliance achieved operational independence and clarity about their respective areas of focus. The charity has developed and shared a strategic plan with volunteers and reviewed its policies, risk management and fundraising plans to enable it to thrive into the future.
XLH UK has been active with the UK community and well connected to international developments since it was founded as a charitable trust on November 18th 2017. The trust was formed by Oliver Gardiner, Nicholas Papé and Amy Lee.
2018 was a momentous year for XLH UK, when we were able to contribute to the Health Technology Assessment that led to NICE guidance recommending burosumab for treating X-linked hypophosphataemia in children and young people which you can read more about here.
In contrast, the years 2019 – 2021 saw support limited by the pandemic. Most activity was conducted online, including webinars with medical experts and updates on the Early Access Trial for burosumab in the adult population.
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 supported IXLHA with accounting, IT and administration services whilst it was forming and contributed financially to a successful international medical symposium in Dublin in 2022. In 2022 it was agreed that the two organisations should become more independent from each other and legal and financial separation has now been achieved.
Our values – accountability, integrity and transparency – underpin everything we do.
Read our review of 2022 and strategic plan here
XLH UK team
The XLH UK Board is supported by wonderful volunteers and freelancers, whom we would like to thank below.
Medical Advisory Committee
XLH UK is lucky to have the support of a selection of multi-disciplinary experts who are knowledgeable about XLH. The Committee’s role is to connect with other experts in UK and abroad, to shape necessary research and advise on how to optimise treatment and care pathways.