We are here for everyone in the UK with XLH 

We are the only registered charity specifically for those with XLH and related disorders in the UK.

We are truly grateful for any donation, large or small, whether a one off sum or a regular payment that will help us plan for the future.

Our Impact

Here are just some of the ways your donations helped people with XLH recently.

  • We ran a survey for adults with XLH, which was submitted to Health Technology Assessors who are determining whether to fund burosumab for adult use
  • We held a family day which allowed people to meet each other in a friendly environment, with a talk from a specialist clinician about XLH 
  • We represented XLH at the Houses of Parliament to raise awareness of rare brittle bone conditions and the establishment of a NHS Rare Disease Care Network (RDCN) of over 22 hospitals across the UK

How we spend your money

For every £1 we spent in 2022: 20p went to support for families, 60p went to support for research, 18p went on Awareness and Advocacy

Thanks to your donations we can keep working towards a sustainable organisation which supports those in the UK with XLH to find their best care.

Want to find out more about XLH UK’s organisation and mission?