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